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  • in reply to: May need a new plan #70912
    kylez
    Participant

    Had my PET/CT which came back with no disease found. So nothing ‘extracranial’ that, per my oncologist, might bring additional treatment choices. Next stop should be my next MRI in a month or so. If no new disease on that, per my oncologist, just keep on as-is with current nivolumab-only phase of the combo. If something new on the MRI, then besides hopefully being treatable with radiation, ASCO with lots of new data would be the next stop. If there’s something with new data, and that can he can obtain, either already approved/off-label or if there is some other way, the idea would be to add that to the current nivolumab.

    I’m holding off on a second opinion for now, although I did call Dr. Ribas’ UCLA practice and it seems he would have a two-week or so availability, at least right now. My next MRI should be the decision point on making that appointment, too.

    So me — low tumor burden, i.e. a new brain tumor then it’s burned off by radiation combined with no extracranial disease. I even asked about low body-mass-index, he said they weren’t sure why it seemingly corresponds to weaker immunotherapy response. And on hydrocortisone replacement therapy since October if that’ a wild card — he says that shouldn’t make a difference though.

    in reply to: May need a new plan #70910
    kylez
    Participant

    It’s wild type BRAF. The mutations from long ago when this started in my lungs are NRAS G12A and wild-type BRAF G466E.

    Re: triple therapy, my oncologist mentioned one possibility, adding a VEGF inhibitor whose goal is to inhibit new blood vessel formation. Might come with a lot of side effects. He said a lot more options would open up if there was an extracranial (my wording) met, which unless the PET scan next week says otherwise, there aren’t. I guess if the most recent 2 brain mets have been helped along by my recent loss of cortisol production (on hydrocortisone now) then maybe something might spring up in the body too. On the other hand, that’s dangerous too. My oncologist doesn’t think taking HC as pills instead of my body producing is worse fo melanoma.

    MDA is another possibility mentioned to me. I went there for a second opinion long ago. I had few options then and the visit didn’t open any more up. They have a lot of oncologists, not sure I would know who to pick as best match for my situation. Boston, OTOH, would be convenient as it could be part of a family trip. I do know of one recommended oncologist at Beth Israel.

    I’m a little nervous about the rock star physician — how much time will they actually spend on my, and about trying to think about my case in novel ways? Also nervous about the non-rock star physician. How to get one that’s a rock star, but isn’t.

    Thanks Catherine.

    in reply to: New discoveries everyday…. #70842
    kylez
    Participant

    I believe it is propranolol. I plan to ask my oncologist the next time I see him.

    in reply to: Diet?? What I learned from scientific meeting (SMR) #70770
    kylez
    Participant

    I think it may be the same group of people that this suspicion about probiotics is coming from, that you passed on to us from the conference you were at. The two researchers in that article were or are both from MD Anderson — both from a lab at MDA that works on immunotherapy, as well as 2 other researchers mentioned. That institute is set up as an umbrella for researchers from several organizations to communicated with each other, including MDA, so it probably is. I’m still leery of yogurt!

    in reply to: Diet?? What I learned from scientific meeting (SMR) #70768
    kylez
    Participant

    The Parker Institute has an article here, https://www.parkerici.org/2018/11/08/could-probiotics-reduce-immunotherapys-chances-of-working-in-cancer-patients/” class=”bbcode_url”>https://www.parkerici.org/2018/11/08/could-probiotics-reduce-immunotherapys-chances-of-working-in-cancer-patients/. I think what is written is probably from some of the same sources you heard at the conference.

    I stopped eating probiotic-labelled yogurt, which is easy to do. But if the theorized goal is promoting gut biome diversity, I wonder how wide the researchers’ definition of ‘probiotic’ goes. Would they extend that to include all live culture food products? Plain basic yogurt has at least 2 active cultures I think. Cheese is cultured, and some other foods are as well like tempeh and Miso.

    in reply to: Kyle: How are you doing? #70830
    kylez
    Participant

    I had Gamma Knife on Wed. They did a higher resolution scan on a higher spec MRI machine that morning. The radiation oncologist said that for the 2 locations, the first one that looked like regrowth, now looked like radiation effect instead. For the other location, which was the new one, it did not grow in the two weeks between the two scans. They did Gamma Knife to the second spot only. So… they had said that the higher resolution scan might show more stuff, but this time around it gave me better news. Very much more so than I was expecting, knock on wood.

    in reply to: Kyle: How are you doing? #70828
    kylez
    Participant

    Hi Catherine,

    Thanks for asking. This past March I had the first new brain met since 2011. They treated it with Gamma Knife and then started me on the Ipi-Nivo combination. On the June and early September MRI reports it was stable and nearly resolved. September was the onset of the permanent loss of cortisol function as a likely adverse event on my pituitary from the combo treatment. On the next MRI report nearly 2 weeks ago that met came back as having grown, not big but to about 1cm. Also a new one showed up, tiny bit bigger. Both are asymptomatic right now. The scarier part of the radiology report was the phrase ‘possibly representing leptomeningeal spread’ with the new met. They will be treating them with SRS this week. I hope the radiologist was being aggressive in his interpretation, focusing on the word ‘possible’. I aven’t talked with radiation oncologist yet about her interpretation but I will Tuesday. My oncologist is suggesting an adjustment/bump to the combo. So all in all not what I was expecting. I don’t know if the adverse event in September and subsequent permanent loss of cortisol production and lack of it for a month had any influence. Maybe it did not. In 3 months, hopefully I will remain asymptomatic, and also therefore be in suspense waiting to hear the outcome of the next MRI in March in the new year.

    in reply to: Call out for UPDATES! How are you doing? #70627
    kylez
    Participant

    I got progression. I’ll know more Wednesday.

    in reply to: Decision made, with trepidation! Re nivo/ipi #70797
    kylez
    Participant

    Fi,

    How possible would it be to get second opinion on your case? Easier said than done while you are in hospital in any case. In the scheme of things where do you rate the facility you are being seen at? I.e., academic medical center, well-known cancer center, etc.

    One thing I got when I started this treatment was a packet from Bristol Myer Squibb, that included a toll free hotline patient call center “to ask general questions about Opdivo + Yervoy” which I called a few weeks ago. Brochure says they can’t offer medical advice but you do end up talking to an R.N. I wonder if that would pry anything loose for you, if Bristol Myers Squibb has an equivalent call center supporting your locale. The web site for U.S. at least is http://www.Opdivowithyou.com” class=”bbcode_url”>http://www.Opdivowithyou.com.

    – Kyle

    in reply to: Decision made, with trepidation! Re nivo/ipi #70794
    kylez
    Participant

    Fi,

    Regarding the 2mg (daily?) dose of dexamethosone, that’s equivalent to 10mg methylprednisone, or 12mg prednisone. I was going to say I don’t know what dose might be used to reverse immune adverse events. One of the articles yesterday did mention a dosage though. They used “high dose intravenous methylprednisolone (125 mg daily)”. If the equivalent 10mg of methylprednisone is your daily dose via 2mg dexamethosone, I think that is about 1/12 what that team used in that case to treat plural effusions presumably brought on by immunotherapy. But… different case, team, patient, situation, and year. Compared that way, though, it seems small. Not high-dose, more like low-dose.

    Keep on feeling a bit better and a bit better.

    in reply to: Decision made, with trepidation! Re nivo/ipi #70789
    kylez
    Participant

    Fi,

    Wow. I’m sorry to hear your body had this reaction. And that you’re in the hospital, to save your life from this reaction, basically. How are you doing today?

    Did they withdraw any of the fluid and look at it under a microscope to characterize it?

    I found a couple of case studies on the internet searching for ‘effusion’ and nivolumab or ipilimumab. They are different situations and scenarios than yours. Like, not the same cancer, timing, immunotherapy drug combination, history, and/or body location, to start with.

    Your situation also make me wonder, some rare reactions are the first time ever, but how many similar ones may have occurred but were never written about as case studies? It seems like sudden effusions on immunotherapy have occurred, rarely, to the lungs and to the heart.

    I hope your recovery continues and you are out of the hospital soon!!!!!

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396732/” class=”bbcode_url”>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396732/ Late Onset Ipilimumab-Induced Pericarditis and Pericardial Effusion: A Rare but Life Threatening Complication

    Quote:

    Twelve weeks after the last cycle of ipilimumab treatment, the patient presented to ED with acute onset chest pain and shortness of breath which started 1 day prior to the presentation.

    Quote:

    Repeat CT scan demonstrated persistent pericardial effusion and large bilateral pleural effusion with compressive atelectasis in the lower lobes (Figure 1(c)). Thoracentesis was performed to drain 1.4 L of pleural fluid and biochemistry revealed borderline exudates with LDH ratio 0.27, protein ratio 0.51, and WBC 667/μL with lymphocyte dominance (57%) but no evidence of malignancy or infection

    Quote:

    Collectively, these results suggested ipilimumab induced immune-mediated pericarditis, hypothyroidism, adrenal insufficiency, and diarrhea for which high dose intravenous methylprednisolone (125 mg daily) was started. Patient achieved remarkable clinical improvement over the 48 hours, and methylprednisolone was switched to prednisone (40 mg daily) and budesonide (9 mg daily) on the third day, and they were tapered down over a month.

    https://jitc.biomedcentral.com/articles/10.1186/s40425-016-0185-2” class=”bbcode_url”>https://jitc.biomedcentral.com/articles/10.1186/s40425-016-0185-2 Recurrent pleural effusions and cardiac tamponade as possible manifestations of pseudoprogression associated with nivolumab therapy– a report of two cases.

    Quote:

    Both of these patients had a history of malignant pleural and pericardial effusions in their disease course prior to the treatment with nivolumab. Following initiation of therapy with nivolumab, they developed recurrent pleural effusions that re-accumulated rapidly within few days after each tap, needing multiple thoracenteses with in the first 8 weeks. Both patients also developed pericardial effusion with tamponade requiring pericardiocentesis. There have been no previous reports to our knowledge in the literature that described this clinical presentation

    Quote:

    In conclusion, patients with history of malignant pleural or pericardial effusions should be monitored closely for recurrent effusions after initiation of nivolumab therapy. Such presentation could represent pseudoprogression and possibly a harbinger of response to therapy. We would posit that careful continuation of nivolumab without initiation of steroids may be the best approach as long as the effusions can be managed with drainage, unless there is clear evidence of progression elsewhere. Careful analysis of fluid with flow cytometry should be considered in such cases as a large increase in lymphocytes may be an indication for initiation of steroids. Increased reporting of these immune related phenomena and studies to understand mechanisms behind such presentation, are necessary to guide patients and physicians with appropriate course of action.

    in reply to: Stage 3c to 4 #70757
    kylez
    Participant

    Ro,

    Once you get through the first 4 or so weeks, everything should be getting back to normal. It may or may not be a “new normal”. Either way, please take it easy, as much as you want or can, and don’t push things too hard. At least that’s what I experienced and did.

    Saw this paper this morning, but it came out in February. Towards the end, they provide a flowchart, “Algorithm for the Management of Melanoma Brain Metastases. It recommends immunotherapy after surgery and/or radiation. Maybe it could help in some way as a justification. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061393/” class=”bbcode_url”>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061393/

    Take it easy on yourself! I hope you will be in a position to do so for a little while.

    – Kyle

    in reply to: Decision made, with trepidation! Re nivo/ipi #70783
    kylez
    Participant

    Fi,

    How did the first infusion go? I guess it is grit your teeth and hang on for the ride, which may or may not be much of a ride at all. You probably got a run-down of symptoms to look for and report back to your team if you ever run into any.

    Today I got my ninth nivo-only infusion. Between the 4th and the delayed 5th Nivo-only infusions I got nauseous and extremely fatigued for 3 or so weeks, accompanied by low sodium, i.e. hyponatremia. Although it being hyponatremia vs. “not a problem” was a point of contention with the oncology team. 130 the day morning before an infusion. 127 three days after an infusion. With an MRI, there was no swelling in the pituitary gland, i.e. hypophysitis. I think therefore it put them off their standard flowchart or assessment of treatment adverse events. They looked for a cause elsewhere, i.e. not due to the treatment.

    Turns out the fatigue and nausea and other emerging symptoms were an endocrine issue caused by my adrenal glands no longer producing cortisol. It all resolved, including the hyponatremia, with being put on hydrocortisone pills. The actual problem looks like it’s because my pituitary no longer produces ACTH, a hormon that tells my adrenals to produce cortisol. If so it is a rarer endocrine side that took out the production of ACTH only. There are a few case studies google will find similar to that. The case studies warn teams to look out for these kinds of symptoms.

    Oncology teams, while familiar with the more common adverse events, are still learning the less frequent ones. My treatment is continuing, knock on wood.

    – Kyle

    kylez
    Participant

    Fi, with the recurrence of a brain met this spring, I chose #3, the Ipi/Nivo combo, FWIW. Factoring into my decision, it’s my 2nd time with brain mets (first was 2010-11). Also I have had nivo before (2014-15), not in combination with Ipi. I have encountered an adverse endocrine event on the combo. It is not debilitating with a replacement hormone and I am continuing in the Nivo-alone phase. But it’s only one person’s choice, for one st of circumstances.

    -Kyle

    in reply to: Stage 3c to 4 #70750
    kylez
    Participant

    Hi Ro,

    Sorry to hear about this for you. Assuming it’s melanoma like the 90% your doctors are saying, melanoma seems to be a clumper and not sending out fingers. I understand it to have been a clump each time for me.

    The two craniotomies I had that they found melanoma (once in 2010, once in 2011) were both followed up with focused beam radiation (CyberKnife once, Gamma Knife once) around the resection cavity only. What was different in 2011 was that Ipilimumab was approved by the US FDA in spring 2011. So there was a systemic treatment they could give me afterwards, unlike 2010. I think that is a large part of why it was a long time to another brain recurrence, which was this spring.

    Resection followed up by focused beam stereotactic radiosurgery, followed by treatment kept it at bay in my brain from 2011 through this spring. In March one was found about the size of yours. They did Gamma Knife only, followed up by treatment (Ipilimumab/Opdivo combination) this time which I am on now. If they can do surgery, I like the feeling that they took it all out.

    I hope you are able to get the same formula — your surgery, followup with Gamma Knife or something like it, followed up by a system treatment depending on what they biopsy. Again assuming it is the 90% case.

    My main job each time was just to show up at the hospital in the morning. By the time they wheeled me halfway out of the OR prep area towards the OR I was passed out on the anesthesia. Then waking up in my hospital room, maybe with the neurosurgeon tapping on one of my toes.

    My recoveries for several weeks are their own situation. It’s taken 4-5 weeks to get back to feeling fully back to normal for me each time.

    I hope you have a good surgery. Hang in there! Knocking on wood for your procedure, biopsy, recovery and next steps.

    Best wishes,

    Kyle

Viewing 15 posts - 1 through 15 (of 188 total)