Mets Day 939 Apparently I’m allegic to Lovenox

Mets Day 939 Apparently I'm allegic to Lovenox

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For the former month I've been injecting myself twice day by day with enoxaparin (Lovenox) – mornings on the left concern of my stomach, evenings on the compatible. I've constructed up a powerful choice of track marks and bruises from the injections. About every week ago, I observed a small rash on the left concern of my stomach. I assumed that this may likely depart, nonetheless gradually has greater in size. Today I sent an email correspondence to Dr. Apolo describing the rash, and enclosing a picture. Less than an hour later, one of many much future health care issuer's assistants from NIH often recognized as me and asked me to come in mechanically. Alrighty then.
The NIH oncology medical organization was empty when I arrived — all of the sufferers had already gone home, and the employees was wrapping up for the week. I sat down with the PA and a pharmacist, who perplexed right by means of the a entire lot of possible causes of my rash. After ruling out poison ivy, or a new laundry detergent, or an insect chew, or some factor else they could give thought of, they concluded that my rash doubtless was being hence of the Lovenox. According to the pharmacist, a delayed reaction to enoxaparin is "not unknown interior the literature," although she'd never for my section obvious one. Lucky me: an alternative one off case.

We outlined alternative blood thinners, including wayfarin and Xaralto. The pharmacist said that wayfarin had too many downsides. She also said that NIH didn't give thought that Xaralto had been sufficiently tested in sufferers with metastatic much cancers, although she allowed that it soon may potentially be. She decided to modification my blood thinner to fondaparinux (Arixtra), and I was provided with two weeks worth of syringes. One upside of fondaparinux is that I basically would have to inject it once a day.

I'm supposed to intently video demonstrate my rash to figure out if it goes away. I have my next scan scheduled for November 18, and I'll see Dr. Apolo an analogous day, so we'll revisit what blood thinner I may want to stay on interior the imply time. Oh, and we'll also uncover out regardless of whether or not my much cancers is creating. No massive deal (hopefully).

Mets Day 916 Back to NIH

Mets Day 916 Back to NIH

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Today I had a comply with-up appointment with Dr. Apolo and a half of-dozen others. Apparently my reputation precedes me: as I was giving my history to the man who was doing the workup, he pointed out that he was acutely conscious of my blog. Maybe it was in my chart, or perhaps they've been told to be careful what they say, as it will be published on line. The fellow closely questioned me approximately my emotional state, making an try to hit upon out if I was depressed or sad or indignant. He mentioned that eighty% of mets melanoma patients displayed indicators of melancholy. He did now not suppose me when I mentioned I wasn't depressed, which made me sad.
Eventually he left and obtained right here again with Dr. Apolo and her assisting forged, which protected two other NIH medical doctors, the man, a medical scholar, and a physician from the FDA who was reviewing proposed medical trials for mets bladder melanoma. Dr. Apolo mentioned that my labs appeared nice quality, and the Lovenox stages were notable. She strongly prompted me to remain on Lovenox for three-6 months, noting that I had pretty some clots and a rather giant and long clot in my hepatic portal vein. We agreed that I'd continue with the twice frequently injections until now not lower than Nov. 18, when I am scheduled to have one another CT scan, and we'd see how issues look then. She had the man order me one another 21 days fee of Lovenox, that may give me a full of 7 weeks. After admiring my massively bruised love handles, she mentioned that I would possibly also inject the the front of my belly (one thing the NIH nurse mentioned ultimate week that I shouldn't do), and can also give injections into my thighs and palms if I desired. She also mentioned to prevent contact activities, so I wager that pointers out the annual Turkey Bowl soccer on line game.

Dr. Apolo mentioned that she had closely measured my nodes, as compared them with the prior scans, and had concluded that me nodes were neither rising nor shrinking, alternatively were stable in size. She also mentioned that the two applicable nodes were adjacent to both other, alternatively were sufficiently out of the odd so that she couldn't combine them for characteristics of medical trial eligibility. She drew a photograph of the two nodes, and explained that they were arranged like a comma, one above and a bite offset from the other. She also mentioned that the scan had picked up some other lymph nodes around my left clavicle and upper torso, alternatively none were enlarged satisfactory to be of any medical significance.

Thus puts me again into the identical quarter I've been in since I ended my chemotherapy: watchful waiting. We all agreed that the merely case situation can be that my nodes with the aid of no means multiplied in size satisfactory to prevent the threshold for get admission to into a medical trial, alternatively if and when that obtained right here about, we'd deal with it at that time.

Speaking of medical trials, I told the FDA doctor that I'd completely want to see a new drug accredited for use on metastatic bladder melanoma, since it had been extra than 20 years occupied with the ultimate drug had been accredited. He was smartly acutely conscious of that reality, and mentioned that the FDA was immediate-tracking investigations into the PD1 and PD-L1 drugs. Dr. Apolo gave the impression to admire my blatant lobbying, alternatively alternatively, I have a vested pastime.

Mets Day 915 Consultation with my scientific oncologist

Mets Day 915 Consultation with my scientific oncologist

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Today I met with my scientific oncologist, Dr. Aragon-Ching of GW's Medical Faculty Associates. She and I had traded emails and spoken by cellphone last week. The purpose of contemporary-day assembly used to be to additional discuss whether I would have to nevertheless reside on Lovenox long term, or in spite of the whole lot switch over to an oral anticoagulant. I additionally thought of as necessary to get her thoughts on my scientific trial alternate options.

Prior to my assembly along with her, I did several studies on whether Lovenox can assist suppress growth of my cancer. Along the form, I got an education on the use of low molecular weight heparins (LMWHs) to battle venous thromboembolism (VTE). VTE includes deep vein thrombosis (DVT) and pulmonary embolism (PE). Patients with cancer — indeed metastatic cancer, and who have had chemotherapy — are at increased risk for VTE. A awesome overview of VTE, and the expanding use of oral anticoagulants, is on hand right here.

The question I used to be watching into is whether LMWHs equivalent to Lovenox can assist inhibit the growth of my metastatic bladder cancer. Lovenox is an injected form of LMWH, with the generic name of enoxaparin sodium. I'm currently injecting myself with 100 and twenty mg of Lovenox twice an afternoon. If there is evidence that enoxaparin can assist slow the spread of my cancer, then I'm willing to continue with the shots. If now not, I'd prefer switching to rivaroxaban (Xaralto).

In the 2009 book, Coagulation and Cancer, by G.F. Pineo and R.D. Hall, the authors write, "Some LMWH compounds were robust in the suppression of tumor cellular growth, metastases (nandroparin, tinzaparin, enoxoparin), and antiogenesis (tinzaparin, dalteparin, and enoxoparin), when fondaparinux (as selective side Xa inhibitor) used to be now not." Id. at 266, endnotes omitted. Elsewhere in the financial disaster, the authors cite other reports that support the thought that LMWHs could possibly also inhibit tumor growth. Id. at 261. The authors conclude:

Over the years it has become greater and greater obvious that the thrombotic manner plays a substantial role in cancer cellular advancement, proliferation, migration and metastasis resulting in the hope that suppression of the coagulation cascade could possibly have a a reputable suggestion  on the cancer. Data from scientific trials at the starting aimed towards the treatment of venous thromboembolism in cancer patients and later directly in cancer patients who failed to have thrombosis provided evidence that LMWH could possibly recover survival in the patients who had a reputable selection of elementary tumor sites . . . .
Id. at 270. Unfortunately, the excepts of the book that I used to be succesful of pull up on Google books omitted the pages with the critical endnotes, so I couldn't readily locate the reports cited for the ones propositions.

Duly arranged, I met with Dr. Aragon-Ching. She said that the evidence that Lovenox can inhibit metastatic interest is form of confined. She said that she would now not give thousands weight to that alternative in making the decision of whether to continue making use of Lovenox, or switching to Xaralto. She acknowledged that Xaralto used to be a comparatively new drug for DVT and PE, nonetheless used to be completely happy that Xaralto used to be as robust as Lovenox. She said that NIH would recommend that I reside on Lovenox, since they do scientific trials for a living, and Lovenox is easily-acknowledged for its lack of interactions with most medication. Because Xaralto is a greater moderen drug, there is truly now not as thousands evidence nearly its lack of interactions, even if she said that it'd be as protected and robust as Lovenox. She cautioned that I have the Lovenox injections for 4 weeks, then switch over to Xaralto, unless I used to be to enter a scientific trial. She launched that, if I went on Xaralto and then later entered a scientific trial, I could possibly switch again to Lovenox with out problems.

Dr. Aragon-Ching additionally said that I would have to nevertheless now not go on coumadin. It does now not work as well, has too many side consequences, and is too weight loss plan-dependent. It's truly an older drug that has been superseded by more recent medication.
On the discipline of scientific trials, Dr. Aragon-Ching said that the key situation used to be whether my nodes were substantial adequate to meet the scientific trial threshold. I realized that the factors for lymph node sizes in scientific trials are set forth in a document referred to as "Response Evaluation Criteria in Solid Tumors" (RECIST). The 2009 edition of the RECIST standards — edition 1.1 — requires that lymph nodes be now not lower than 15 mm on their brief axis before they could be judicious a "target lesion" for applications of a scientific trial. As mentioned in a little bit of writing summarizing the new instructions:

Mets Day 910 Discharge and on-line game plan

Mets Day 910 Discharge and on-line game plan

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This morning I had a V/Q study, which is a tremendously lung ventilation/perfusion scan, to degree my lung capacity. It showed that I was at about 70% of expected perfusion capacity, which confirms that my PE is impacting the capability of my lungs to oxygenate my blood. After I'm on the blood thinner drug treatments for six-8 weeks, I'll have a take a look at-up V/Q scan to make certain that the complications referring to my PE have been addressed.
I then was instructed on how to inject myself with Lovenox. Last night, Jennifer obtained instruction and successfully injected me. This morning I successfully showed that I would possibly shoot myself, so to communicate. I was told that I would be discharged later in up to date instances with 56 syringes, sufficient for 4 weeks of twice day-by-day injections. I'll be reassessed at that point to suppose of wither I can drop to a as soon as day-by-day injection. Perhaps finally I can be ready to switch to an oral blood thinner, such as rivaroxaban (Xarelto), despite the indeniable actuality that I was warned that Xarelto has solely been recently permitted for DVT and PE, and there's limited data on employing it with mets melanoma patients. In addition, Xarelto has not been as smartly-studied for drug interactions, so if I ever enter a medical trial and was on Xeralto, I'd probably ought to go again onto Lovenox. Plus, if ever I was badly bleeding and wanted to reverse the outcome of the blood thinner I was taking, Lovenox would possibly smartly be reversed, similtaneously Xeralto can not, and would ought to metabolize out. The question is, how plenty of a soreness it be to inject myself day-by-day or twice day-by-day, both in terms of the hindrance of doing it, and the continuing bruising and tenderness within the injection web sites, versus the feasible risks from Xeralto? Eh, I'll cross that bridge later.

I also had a seek advice from NIH's hematology department – the man showed up 90 minutes after the scheduled time, and the attending medical doctor wandered by a 1/2 hours thereafter. Oh that I would possibly bill doctors my regularly happening criminal trained billing rate for for all time that I've spent waiting for doctors. Anyway, I was questioned in depth by the man on feasible symptoms, causes, and domestic historical past of DVT and PE. Aside from my brother having had DVT and PE last year for unexplained reasons, there's not any prompt domestic historical past to my talents. Hematology will have my blood run via a couple of tests and possibly a broader genetic sequencing for further conception, having spoke of that the man guessed that my PE is a primary case of metastatic melanoma and chemo inflicting my blood to develop into sludge. Interestingly, the attending spoke of that there has been limited facts suggesting the Lovenox would possibly possibly inhibit the enlargement of express sorts of malignancies, so he mentioned that I remain on that as an alternative of shifting to Xeralto. Note to self: do a few take a look at-up research on that.

I also met as soon as again with Drs. Wood and Apolo. They are going to coordinate my take a look at-up care with Dr. Aragon-Ching, who will see me subsequent Monday. I gets back to visit with Dr. Apolo subsequent Tuesday, to further explore whether any medical trials are currently accessible to me, and in that case, whether now could be an perfect time to do one. Dr. Apolo spoke of that, despite the indeniable actuality that my supraclavicular nodes aren't expanding in size, Monday's CT scan was ready to detect that I have a cluster of supraclavicular nodes that are increased than formed: two are about 1 cm across on the transient axis, and others are smaller than 1 cm, having spoke of that still increased formed. Dr. Wood in contrast those nodes to a cluster of Hershey's kisses that have commenced to melt. They were still fantastic, having spoke of that the borders were starting to develop into less fantastic. While Dr. Wood's HER2 medical trial required a unmarried tumor in any case 2 cm in size, Dr. Apolo spoke of that, for the PD-L1 trials that she had in thoughts, it would possibly be feasible to think about the aggregate of those cluster of nodes to meet the minimum size. She spoke of that later in up to date instances she was going to sit down with the radiologist who at the beginning read Monday's CT scan, and do the following comparison of my CT scan. We'll communicate about subsequent week her suggestions on feasible medical trials.

I'm not of the thoughts that I deserve to jump into any medical trial that can be open to me. For example, Dr. Wood's Phase 1 HER2 study seems too unproven for me at this point. If I had optimum tumors in my liver or lungs, and there were no other therapies accessible to me, then I would possibly possibly think about it. But I currently have a comparatively dwindled metastatic melanoma burden, and know that, in all chance, my melanoma is possible to development in time. Each treatment is like a unmarried bullet: I'll possible be ready to use each treatment solely as soon as. There is no expectation that any treatment will cure me, since there's not any acknowledged cure for metastatic bladder melanoma, and none on the prompt horizon. Instead, each of these experimental therapies are meant to slow the enlargement of melanoma, and prolong my life. The question for any future is treatment will be a balance of my present condition against the wisdom of waiting; the likelihood that the treatment would work on my mets BC; and the possible aspect outcome. I'll be making that decision after in-depth consultations with my doctors.

I've principally abandoned the concept of getting my metastatic nodes eliminated. I questioned both Drs. Wood and Apolo about that concept, and they firmly rejected it, for three reasons: First, there's not any facts that a lymphanadectomy would support me. The reviews on lymphanadectomies on patients with metastatic melanoma differentiate amongst those nodes observed within the stomach (whereby there is a few facts that removal of additional nodes can support, which is why I had sixty one nodes eliminated on the time of my radical cystectomy), and nodes within the chest, whereby there's practically no facts of any a official suggestion . Second, a lymphanadectomy would not be curative, or probably therapeutic, because my bladder melanoma is systemic international my lymph node tools, and isn't always confined to my enlarged nodes. As Dr. Apolo spoke of, "you have a systemic disease. It calls for a systemic treatment." Third, the risks to having a lymphanadectomy of those supraclavicular nodes are significant, particularly nerve hurt to the shoulder, left arm, or probably the midsection, as smartly as potential hurt to the veins and arteries lacing that region. On balance, the risks of a lymphanadectomy outweigh the blessings.

Mets Day 909 PE, CT, chuffed me

Mets Day 909 PE, CT, chuffed me

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I'm then again in the NIH hospital. They'll keep me here until day after this day, since they  verify that I am getting the superior dosage of Lovenox to wreck up my pulmonary embolism (PE). I've been getting 120 mg of Lovenox twice a day. Tonight the nurse will teach Jennifer and I how to do self-injections. Tomorrow morning I'll turn out that I can do it, after which I'll be discharged after a further set of labs verify that the complete concerns is adequate.
I'll have to keep up with the Lovenox injections twice each day for at the least 4 weeks. The doctors  make sure that that all of my clots and deep vein thrombosis (DVT) has been addressed. After 4 weeks, I could shift to once each day shots, that could go for six months, or it could last as long as I have bladder this type of lot cancers. We'll see. Since mets this type of lot cancers is a known risk factor for DVT and PE, her wondering is that I should this type of lot likely stay on the Lovenox for something else of my life. Neither Dr. Apolo nor Dr. Wood counseled that I go on coumadin, because or not it's miles so challenging to modify and will be as an alternative unpredictable. I'm not excited about each day shots into perpetuity, then again or not it's better than dying from a stroke. (A few minutes previously, I spoke with Dr. Aragon-Ching, who said that or not it's going to also be possible after 30 days or so to transition me from Lovenox to oral Xarelto. I will meet with her on Monday to get her views on my follow-up care.)

Dr. Wood gave me a replica of my CT scan. It confirmed "redemonstrated right lower lobe calcified granuloma", similarly "new, well-defined, linear low-density filling defect throughout the necessary facet of the main portal vein, extending from the portohepatis to the confluence of the SMV" and "an additional filling defect is famous in the necessary left portal vein." In other phrases, I've obtained a group of blood clots in my lung and portal veins in my liver. The outcomes of this scan were what triggered Dr. Wood to order me again to the hospital last evening. Reading it, I can remember why. Compared to my scans of 9/2/14, 7/15/14, and three/25/14, these clots are new and dramatic. All of the clinical specialists which have attended me – the doctors, PA's, nurses – have once again and once again told me how lucky I am that I in basic terms came about to have a scan that detected the PE earlier than I had any symptoms.

The CT scan additionally reported on the size of my enlarged lymph nodes below my left clavicle. The radiologist reports "light period shrink in the size of the awesome left supraclavicular lymph node, measuring about 1.0 cm in the short axis dimension, previously measuring 1.three cm." My other nodes in the area are good in size, the biggest about 1.0 cm all over. This finding that my largest lymph node as decreased in size is a chunk excellent, since I have not had any therapy since my last scan. It will be in consequence of how the CT scan sliced the node, even if the radiologist was definitive in his conclusion of "good and period shrink in size, respectively, of the 2 prominent supraclavicular lymph nodes."

Aside from the PE, there are two other on the spot takeaways from this CT scan:

1) My this type of lot cancers appears to have stopped fitting for now, and is honestly receding. This is a surprise, and to date, nobody has been prepared to explain it. I'm grateful that it has, and offers due to God for this news.

2) The smaller size of my nodes mean that I don't qualify for the HER2/neu trial that triggered this recent round of a laugh and games. The minimum tumor size has to be 2 cm. I additionally this type of lot likely is not going to qualify for any of the PD-L1 trials at this time either. Dr. Apolo told me this morning that she was going to in my view measure the node size when she reviewed my CT scan pics, yet I have not heard again from her. This ability that I'm again to watchful waiting – a similar place I was prior to about 11 am the former day morning. Ooch, whiplash.

Mets Day 908 From scientific trial inquiry to hospitalization

Mets Day 908 From scientific trial inquiry to hospitalization

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This morning I won a call from Brenda Robinson, the medical trial coordinator for Dr. Lauren Wood at NIH. Ms. Robinson informed me that she was involved by getting me to participate in a medical trial relating to a customized immunotherapy the used the fact that my cancer had HER2/neu overexpression. She stated that she had an rapid slot obtainable for me, and asked if I too can come in that afternoon for a CT screening. Although I did now now not have sufficient lend a hand to figure out whether I essential to participate in that exact trial, I agreed to go in for the scan and get extra lend a hand.
Two hours later, I was at NIH. I went to phlebotomy for the blood draw and urine scan, then went to radiology for the CT scan. The receptionist stated that she did now now not but have my orders from the doctor, so I went upstairs to the health center to uncover Ms. Robinson. She all of the unforeseen appeared and was surprised that the orders were now now not but entered. She went to the desktop and got every factor installed, and returned with an 11 page disclosure about the medical trial. It was NIH NCI Study No. thirteen-C-0016: Phase 1 take a look at about of adenoviral transduced autologous dendritic cellular vaccine expressing human HER2/neu ECTM in adults with tumors with 1-3+ HER2/neu expression. I started out reading inside the course of the disclosures when Ms. Robinson stated that Dr. Wood was obtainable to meet with me and explain a chunk extra about the trial.

Dr. Wood was joined by a team of five: a fellow, two medical students, and two nurses. She enthusiastically explained the intent of the trial. I situated that this was a prime-in-human trial for a new kind of custom designed immunotherapy. She explained how my cancer had validated positive for HER2 overexpression (the scan somewhat simply were plus 3). The HER2 protein sends signals to tumor cells to make them develop and combating the tumor from dying. HER2 overexpression has been studied extensively in connection with breast cancer, in which it too would be present in 25-30% of cases. The HER2 genome is responsive to a bunch of medications, together with trastuzumab (Herceptin), pertuzumab (Perjerta), and ado-trastuzumab emansine (Kadcyla), that are monoclonal antibodies that identify and inhibit distinct quantities of the HER2 protein. The medicines would wish to be administered again and again to have an end result, and that they do not essentially work on all HER2 cancers.

The medical trial is composed of the creation of a AdHER2 DC vaccine to induce the sufferer's possess immune supplies to make multiple, lessons of antibodies to HER2, referred to as polyclonal antibodies. Mammalian reviews have shown that a AdHER2 DC vaccine has caused vast regression and shrinkage of colossal customary tumors. A YouTube video of this trial is equipped right here. The goal of the trial is to set up if the vaccine that works in mammalian reviews too would be translated to human beings. Because monoclonal antibodies reminiscent of trastuzumab can adversely have an end result on cardiac feature in some patients, the FDA is requiring this trial to closely monitor cardiac feature.

I was informed that the trial may encompass the removal of certain varieties of my blood cells through a process referred to as apheresis, in which my blood is drawn, run through a cellular separator equipment to take out my circulating cells (together with lymphocytes and monocytes), and the plasma and red cells returned to my body. The circulating cells are then used to custom make a vaccine. Enough circulating cells are removed sometime soon of apheresis to make 5 or 6 batches of vaccine, using my very possess dendritic immune cells. Those dendritic cells are derived from the monocytes in my circulating cells. The NIH doctors may mix in a aggregate of trastuzumab, pertuzumab, and ado-trastuzumab emansine into that vaccine, then may inject it transdermally (under my skin). The protocol calls for five rounds of injections: weeks 0, four, eight, 16, and 24, to boot as two years of monitoring.

After attempting to digest all of this lend a hand, I went back downstairs for the CT scan. The tech was unable to get a return blood draw from my port, suggesting that there was a clot or different kind of blockage round the tip of my port. She was capable of inject heparin into my port, having stated that, so we used it for the injection of the contrast sometime soon of the CT scan. While wanting out ahead to my CT scan, I sent an email to Dr. Apolo, asking for her input on whether she thought that I ought to always enter this exact medical trial. After summarizing the trial, I wrote:

I am best involved by your recollections on whether I ought to always participate on this take a look at about, or as a switch join the 2 your PD-L1 take a look at about, or the MPDL3280A take a look at about, or some of some different trials that we had discussed. My initial impression is that, as the HER2 take a look at about is a prime-in-human segment 1 trial and the healing end result is unknown, it too would be extra useful for me to affix a PD-L1 trial as a switch. Or ought to always I take a stab at this, then do the PD-L1 trial later? Or vice-versa?
I left for family after the scan. I was informed that I ought to always plan on coming back to NIH the subsequent day for a bone scan, echocardiogram, and additional discussion of the trial protocol. I stopped at Chipotle on the means family, as I had now now not eaten since the nighttime before. While walking into Chipotle, Dr. Apolo referred to as me. She stated that she had informed Dr. Wood about me back in August, having stated that expected that Dr. Wood may have spoken with her before contacting me. She recalled that we had made up our minds to wait until my next scan on November 18 before deciding what course of treatment, if any, and appeared surprised that her colleagues had initiated contact with me a couple of tribulation. While praising Dr. Wood's revolutionary investigation with the AdHER2 DC vaccine, Dr. Apolo cited that it was a prime-ever Phase 1 trial, and there was no evidence that it may work in human beings. By contrast, the PD-L1 trials had shown vast response in extra than 50% of take a look at about individuals. She stated that, while it was effective to have possibilities on trials, she may recommend that, if I was to favor to enter a tribulation, she may recommend that I take part in a PD-L1 trial. She proposed that I defer for in spite of the whole lot per week my decision on whether to enter Dr. Wood's HER2 trial, and inside the period in-between Dr. Apolo may review the somewhat simply of contemporary CT scan, and meet with me on Tuesday, October 14. That sounded exceptional to me.
Five mins when i got family, I was referred to as by Dr. Wood. She stated that she had simply reviewed the somewhat simply of my CT scan. She stated that it showed an immense clot in a vein in my liver, and multiple clots inside the reduce lobe of my right lung — a serious case of pulmonary embolism, or PE. She asked me to promptly return to the NIH health center for management of blood thinners. She stated that I may be too would be inside the health center for a day or two. I briefed Jennifer, jumped back inside the Audi and went back to NIH. After I was admitted, I met with Dr. Wood, who had waited for my return. She explained that mets cancer patients were at increased menace for PE. She stated that the finest treatment too would be for me to have two subcutaneously injections day-by-day of enoxaparin (Lovenox). She stated that this was extra effective in patients with a cancer burden than IV-administered unfractionated low molecular weight heparin.

So now I'm reclining in my health center mattress staring at the Deadskins get thumped by the Seahawks. At round halftime, the nurse came if to inject the Lovenox into my stomach. She admired my love handles, and stated that they were preferrred for the injections. I smiled with the scoop that the decades of preparation for this day has finally paid off. I'll get a different injection the subsequent day morning, and then may be gets gifted on injecting myself. I'll ought to do the injections twice a day for a larger month or so, then too can have the capacity to shift to oral therapy. Whether by serendipity or a chunk of divine intervention, I'm grateful that the PE was detected without my discomfort any damage. It was (ahem) a stroke of nice luck.

Mets Day 898 Further consultations on my medical care business alternatives

Mets Day 898 Further consultations on my medical care business alternatives

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Yesterday afternoon I sent the ensuing email to Dr. Jeanny Aragon-Ching, my extent one medical oncologist at GW University:

Dr. Aragon-Ching:

Following up on my visit with you on Monday, September eight involving my PET-MRI scan results from NIH: Last week I became advised by Corrine Keen, Dr. Apolo's medical nurse, that I became required to signal a consent form before NIH would possibly send you copies of my scans. I have since signed and again the shape, so optimistically make certain you be receiving these scanssoon. I can be most interested to put attentiveness of your stories as soon as you've got reviewed my most updated scan.

I had understood from our conversation on September eight that you were going to examine on the ensuing:

1. What is the popularity of tissue from my melanoma being sequenced? Has either GW or NIH sequenced my melanoma, and in that case, what are the implications? If not, is there sufficient tissue available to hold out a genetic sequencing? The 4 sources of tumor available for biopsy can be as follows: 1) the fine needle aspiration at NIH on nine/5/thirteen; 2) the bladder and nodes eliminated for the duration of my radical cystectomy at the University of Chicago on 5/2/12; 3) the TURBT performed by Dr. Fred Hendricks (GW MFA) at GW Hospital on 1/5/12; and 4) TURBT performed by Dr. Hendricks at GW Hospital on 12/1/11. FYI, I have checked with my insurer (United Health Care), and am advised that the money of genetic sequencing is covered, given that you succeed in a preauthorization, and either send it to an in-network lab, or succeed in preapproval to send it to an alternate lab. According to UHC, the ensuing labs are thought-about to be within the UHC network:

Myriad Genetics
Bioreference Labs
Integrated Genetics
Integrated Oncology

2. Regardless of whether there's tissue available from one among the older biopsies, does it make sense to have the tumor in the enlarged node biopsied and the tissue analyzed? Or is it sufficient to assume that the mets melanoma in that node is actual to or sufficiently comparable to the subject topic that became biopsied at NIH on Sept. 5, 2013?

3. I to take into account that there's no definitive statistics on effect of lymphadenectomy [removal of the cancerous lymph node] and its contribution to survival on patients who continue to have nodal positive disease after chemotherapy. I have reviewed the articles with the ensuing links, and strong looks if I need to further explore the probability of lymphadenectomy.
EAU 2014 – The curative technique of lymphadenectomy after response to chemotherapy in patients with urothelial carcinoma presenting with regional or distant nodal metastases: Analysis of a assortment from a tertiary melanoma centre

I understood your stories were that the statistics did not expressly advisor lymphadenectomy in my case, and that the negative aspects likely outweighed the benefits. Is that accurate? On another hand, I have a troublesome time understanding why cutting out a turning into tumor is a negative thought. If I wished to further trust lymphadenectomy, with whom your you endorse that I speak?
4. You really helpful that I loosen up and wait unless my next scan (presently scheduled for 11/18/14 at NIH), and if that showed that the node became over 1.5 cm on the quick axis, that I need to trust one among immunotherapy medical trials. Do you assume that course offers me the greatest probability for expanding my prominent survival?

Thank you for your ongoing care.
Last night she responded with the ensuing:

I haven't received the scans from NIH yet but I've attached the genetic findings out of your tumor from what Dr. Apolo has sent. [chart follows]

SoftPath ID
Gene Accession #
coding seq distinction
protein distinction
Interpretation

SB-thirteen-5207
NM_000546.5
p.Arg280Thr
Deleterious

The mutation is p53 which is not commonly (as of yet) an actionable goal per se. I don't assume there's enough cells from the FNA [fine needle aspiration] to do greater sorting out and the molecular sorting out that the good option fits our desires (if we are to do greater sorting out) can be Foundation One Medicine or Caris Life Science sorting out, which are sorting out for drug objectives (as against the genetic tests run by Integrated Genetics or Myriad, etc which is used greater for hereditary sorting out or diagnosis, as an example).

While I do to search out merit in lymphadenectomy for localized disease, your area of lymph node involvement is for sure complicated to resect out, and this can be the sector of cardiothoracic surgery (just because of the place it is located) and just because these are underneath the clavicular (collar bone) area, it is perhaps very complicated to traverse (unlike say in the belly – continuously a retroperitoneal lymph node dissection is performed) just because of the collar bone (which connects your shoulder to the breast bone, mandatory nerves/blood vessels in a cramped space in that area that could go away your brachial plexus weak). We mostly follow the guidelines of thoracic surgery (as an example, for lung melanoma) the place involvement of these upper level supraclavicular nodes would mostly preclude surgery as an option.

I acknowledge that it's tremendous robust to "loosen up and wait" in the face of these circumstances and I am painfully awake about the uncertainty that this entails. If we did not have the immunotherapy option and the burden of disease is much greater (which means the size is much bigger and greater disease is seen on your next scan), then I would prefer chemotherapy still (therein lies the next question of which chemo). However, if the adenopathy has simply ever so a little bit greater but to the facet the place you're eligible for the trial, then I assume it's well value thinking of it just because of toxicity reasons (possibly less toxic perhaps).

Take care, JBA
This morning I'm still mulling over this hints. I don't to take into account the hints from the genetic findings, and shall be performing some further readings about understanding genetic hints mostly, and the p53 mutation specifically. Also, I'm a bit puzzled just because I became previously told by a few of my medical doctors that my bladder melanoma had a massive form of mutations; whereas this genetic discovering identifies only one mutation. Maybe it became just since the genetic screening did not test for all mutations, or just because it stopped after discovering the primary mutation, or maybe it's just because my metastatic bladder melanoma has only a single identifiable mutation.
I'm also mulling over the hints involving lymphadenectomy. I to take into account Dr. Aragon-Ching to be saying that, if the node were in specific places, lymphadenectomy would possibly be a smarter option, but given it's most updated location, the negative aspects outweigh the benefits.

I have no difficulty waiting and seeing, given this is commonly the the good option option. Heck, I've been doing that for greater than two years; waiting and seeing for 15 months after my RC surgery, unless the distant nodes popped up; get nuked with ddMVAC chemo; then wait and spot for an alternate year. If waiting and seeing is for sure the the good option course, then I'm all for it. It's simply that I'm not absolutely persuaded at this facet.

Mets Day 895 – Visiting my granddaughter

Mets Day 895 - Visiting my granddaughter

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I spent the past week in Utah, staying with my oldest daughter and son-in-law. The tournament become the 1st birthday of my (handiest) grandchild. I had an hugely judicious time, spending hours on a daily foundation reading books with Rose, attempting to find her toddle around, and just having fun with the second one. Chelsea had the week off from the hospital — her first holiday each time you contemplate that starting up her residency — so I become competent to spend time together with her (and Josh) also. We went to the zoo, the dinosaur park, and a hike around Causey Reservoir. We did just a couple of projects around their condominium, and hung up a swing for Rose on the branch of an apple tree of their again backyard. It also become judicious to trip at with multiplied cherished ones who attended the birthday celebration. There is a lot joy and rejoicing that can be discovered in some of the most pleasures of spending time with the ones you like.
I have spent very little time questioning of the resultseasily of the offer scan. About the suitable component it's preference is that I become spurred to end compiling a chart of our a extent of accounts and obligations, consisting of all of the URLs, account numbers, person names, passwords, settlement records, and criticism. It takes a surprisingly lengthy term to drag all of that records collectively very best into a single doc. Other than that, my thoughts is untroubled, and I truely stay in the second one.

Mets Day 880 – Second opinion on my cure possibilities

Mets Day 880 - Second opinion on my cure possibilities

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Today I met with Dr. Aragon-Ching, my clinical oncologist at GW. She is the medical professional who has overseen all of my chemotherapy, and I respect and trust her percentages. Last week, I had sent her the next email:

I assume that Dr. Apolo has recommended you of the outcomes of my PET-MRI scan that I had on 9/2/14, which showed an enhance in size within the supraclavicular lymph node (1.5 cm x 1.35 cm), with active uptake of the F18 flouride glucose, as well as enlargement of adjoining nodes. I'd want to fulfill with you to talk about my remedy percentages. My questions include the next:

1. Last November, when we suspended my dose dense MVAC after 3 rounds, we discussed the alternative of going back to it if the scans showed further growth. In pale of the 9/2/14 scan outcomes, does it make exceedingly feel to give thought any further chemotherapy, and if so, what type?
2. Is it price taking into account adding a taxene into a cisplatin-essentially structured remedy? If so, is that potential outside of a clinical trial?
3. What clinical trials, if any, would you place forward that I think about?
four. What would you do if you were me?
She organized for an appointment today, and spoke with Dr. Apolo about my scans. I also did a considerable quantity of analysis on pubmed.org to review the principle latest literature on remedy of metastatic bladder melanoma, and browse multiple dozen articles. A significantly life like article became Chemotherapeutic and targeted biologic agents for metastatic bladder melanoma: A entire review, published in January 2014 within the International Journal of Urology. It summarized the principle up to date prime practices, latest analysis, and plenty of current clinical trials. Also of note became Optimal remedy for metastatic bladder melanoma, simply published (September 2014) in Current Oncology Reports.
I also researched articles pertaining to to the possibility of having my metastatic lymph nodes removed. A June 2014 article in Clinical Geritouintology Cancer, Postchemotherapy lymphadenectomy in patients with metastatic urothelial carcinoma: long-term efficacy and implications for trial design, suggested that there could also be a survival skills for the removal of diseased nodes. Another article, Lymph node metastases in patients with urothelial carcinoma variants: affect of the actual variant on nodal documents,from the June 2014 adaptation of Urologic Oncology, confirmed that micropapillary bladder melanoma (the kind I have) is the principle fashioned to have node positivity.

Thus prepared, I met with Dr. Aragon-Ching for more than an hour. She is likely one of the imperative prime sorts of clinicians — when you meet with her, all of her attention is concentrated upon you, the patient. She severely isn't speeding to an less complicated appointment, or terse and abrupt in her communications. Instead, she willingly explored all of my questions, as well as the counsel from the articles that I introduced.

She began by stating that, while she had spoken and traded emails with Dr. Apolo, she had not yet acquired a copy of my most latest scan. She cautioned me that the PET-MRI imaging is a clean technology, and the undeniable reality that it measured my node to be bigger than my prior CT scans didn't necessarily mean that it had all of sudden surged 30% in size in 6 weeks. Instead, she said it became potential that the clearer decision of the brand new scan became simply a far more competent picture of what had been going on in that node for lots of years. (She also acknowledged that it became potential that, exceedingly my node had taken off in growth, even though she said that would be strange for a distant bladder melanoma metastases.)

She also said that, when regarded within the huge picture of metastatic bladder melanoma that she sees each one day, the outcomes of this scan were no huge deal. Her goal became not to brush off my considerations, but in its place to lay into context what became going on to me in contrast to various Stage four bladder melanoma patients. They could have assorted tumors of 3 cm or bigger of their liver, or lungs, or various organs, and yet they're still being actively treated. I appreciated her message and reminder that it may perchance be tons worse.

Building on that, she said that she became purchasing groceries into the fate of the likely course of my disease, and that became strongly influencing her views on what I may still do now. Dr. Aragon-Ching felt that my mets bladder melanoma still became chemo-sensitive — she believed that the reason why my mets BC became quiescent for the beyond yr became due to ddMVAC remedy that I had last fall — and that my body may deal with no less than one more set of platinum-essentially structured chemotherapy therapies. That being the case, the question she became asking herself became, when became the prime time to give me that course of chemotherapy. She said that various patients who had tumors of their organs could have their lives elevated by having more chemo to slow the expansion of those tumors. She said that it became a great deal likely that, at some point within the fate, I also would have those vary of distant tumors. She would pretty preserve the alternative of more chemotherapy in reserve for when I exceedingly need it. As far as what vary of chemotherapy she would think about, she said that we would cross that bridge when we came to it. She said that there were lots of percentages attainable, consisting of carboplatin (in its place of cisplatin), adding a taxene, and perchance various medication which can target the actual variants within my melanoma.

That segued to the question of what actionable counsel may perchance be obtained from the actual vary of mets MC floating circular in my body. Dr. Aragon-Ching said that we were still years faraway from custom designed-made medicine, where each one melanoma may perchance be run with the aid of a DNA scan and a determined on remedy designed for the disease. Knowing the mutations or unique qualities of my melanoma became not significantly handy, end result of the reality we simply do not want sufficient details of the means to regard each one such variant. Researchers are sorting out completely various establishments and hypotheses, but doctors are still treating cancers on an ordeal and mistake basis, she said. She agreed to follow-up on checking into the outcomes of my melanoma being sequenced, as well as samples being stained, to favor with sorts of medication may well have a far more competent opportunity of working on my melanoma.

We also discussed even if it made any exceedingly feel to have my enlarged node or group of nodes surgically removed. She said that there became very little proof that such surgery had a life like affect. The one be taught that I showed her referred not to enlarged nodes, but to residual melanoma after chemotherapy. In addition, the placement of my enlarged nodes — lower than my clavicle, next to the brachial plexus nerve bundle — introduced substantial risks to any surgeon who went probing circular in that vicinity. She acknowledged that she became not a surgeon, but strongly recommended that I not do that. However, she did agree that it may well make exceedingly feel to do one various fine needle aspiration of that node, if more cloth became needed for DNA sequencing or staining. She said she would visual attraction into that and get back to me.

Dr. Aragon-Ching said that, in her opinion, the prime remedy attainable for me in my location became one of the imperative clinical trials the use of immunotherapy with PD-1 or PD-L1 expression. She gave me a set of powerpoint slides on PD-1 and PD-L1 immunotherapy that she simply introduced on the last meeting of ASCO (American Society of Clinical Oncologists), which reported up to 50% response between patients who had mets BC, prior chemo exposure, and distant tumors. There are four completely various drug businesses aggressively trying to prove the efficacy of that class of medication on metastatic bladder melanoma. She said that it could make no difference if I waited many completely various months, end result of the reality if the immunotherapy worked, it could shrink the tumor. Plus, she said that, as a value of being in a clinical trial, a patient desires to fulfill the standards for the be taught.

We left it with my medical professional having three presents to follow up on, and she or he would get back to me. I well-knownshows how NIH had already scheduled a follow-up CT scan for me on November 18, with the belief that it could show the node having grown to sufficient size that I met the requirements of the clinical trials. In the meantime, if we receive further counsel which indicates one various course is more competent, we're going to pursue that.

Mets Day 875 – My melanoma is slowly rising to be

Mets Day 875 - My melanoma is slowly rising to be

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This afternoon I got a name from Dr. Apolo with the consequences of the former day's PET-MRI scan. She reported that the scan supplied incredible footage. The terrifi information is that the scan did not divulge any tumors in my organs. The undesirable information is that the scan showed that the so much cancers is slowly developing in a identical institution of lymph nodes near the base of my neck, where the distant metastases turned into first detected in August of last year. She reported that the scan showed that the size of the biggest node turned into 1.5 cm within the lengthy axis, and 1.35 cm within the temporary axis. She pointed out that the scan showed that there turned into a so much cancers tumor developing within that node, seeing that the scan showed uptake of the 18F-flouride glucose. She delivered that other nodes within the neighborhood have been moreover a reasonably large in size than turned into meditated in past scans. This suggests that my metastatic so much cancers turned into not sterilized by the dose dense MVAC chemotherapy that I had last fall, and has resumed its enlargement in my lymphatic system.
Dr Apolo pointed out that there turned into no usual medication that she would possibly recommend at this point. I've already had two rounds of cisplatin-depending in certain cases chemotherapies, and my so much cancers had been proven to be cisplatin-resistant. She pointed out that the so much promising medication would possibly be an experimental immunotherapy, which is handy so much helpful through a clinical trial. The principles for entering such trials, even so it, are that the tumor has to be as a minimum 1.5 cm in size on its shortest axis, and mine is considerably below that size, at 1.35 cm. She advocated waiting for a few months, then having an chance scan. In the meantime, she would possibly review the plenty of clinical trials handy, and we can speak the execs and cons after my subsequent scan.

Although I already knew the reply, I asked even if disposing of the nodes would possibly have any a official selection influence. Dr. Apolo replied that studies had proven that there turned into no therapeutic advantage to disposing of metastatic nodes, seeing that the so much cancers turned into unfold all around my lymphatic system. Removing the nodes would not likely slow the unfold of so much cancers to other components of my body.

This information is disappointing but not unfamiliar. If something, the marvel has been how slowly my mets has moved. Maybe or not it's going to continue to develop slowly. Maybe we'll transform aware of an experimental medication that can slow or perchance opposite it (despite the proven reality that which is an prolonged shot). The for sure outcome is that or not it's going to unfold like, properly, a so much cancers, and finally overwhelm my body. My hope is tempered with reality, but my religion remains unshaken:

Oh that my phrases have been now written! oh that they have been printed in a ebook!
That they have been graven with an iron pen and lead within the rock for ever!
For I have an figuring out of that my redeemer liveth, and that he shall stand at the latter day upon the earth:
And though after my dermis worms destroy this body, but in my flesh shall I see God:
Whom I shall see for myself, and mine eyes shall behold, and in no manner an chance; though my reins be consumed within me.