@ericainms
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- November 13, 2019 at 5:34 pm
I’ve done a good bit of research this morning and David has, according to Dr. Google, unprovoked recurrent pneumonitis and pericardial effusion as a side effect of the immunotherapy. (Unprovoked because it recurred despite discontinuing the immunotherapy treatment). Rare enough that I don’t see any accepted treatment, but it looks like a longer term stay on the prednisone and an extremely gradual taper, possibly monitored with CT scans, is what is probably required. I guess we will up the prednisone and stay on a steady dose until the December appointment with the pulmonologist. Would be really nice to have a physician helping us through this, but it is what it is I guess.Also – weight gain on prednisone is a real problem. For me. David has developed a sweet cook and affinity for baking.
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- May 20, 2019 at 5:26 pm
Can you expand on your concerns? Letting things take their natural course means that you would die of melanoma. Guessing 99%. But I don’t know how long that would take. 1 year? 2 years? 5 years?What is it about the surgery that you are adverse to? For most people, the pros/cons of your procedure is hugely weighted in favor of having the surgery. Now, if it was my father, with multiple health concerns, we might choose to forego the surgery. Or do the mole removal but not the SNB.
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- February 8, 2019 at 6:16 pm
Husband was diagnosed with Stage 3C in 2002. We did GM-CSF off label for ~6 years, chasing removing positive lymph nodes every year or two. He was NED from 2005 until late last year, now Stage IV with a mass in his lymph nodes under his arm (primary mole was ankle), and a mass on/in a rib. He just did round 2 of Ipi/Nivo and was in the ER yesterday getting checked out for a high fever. They ran a bunch of tests, including an x-ray. He read the radiology report and told me that it mentioned that there was no sign of the mass on the rib that was evident in the previous x-ray (Nov 2018). We aren't surprised, since the rib pain has disappeared since starting treatment.
So, I don't know that we count as Stage 3C and "made it", but we are successfully beating it back. It is amazing how much the treatment has evolved since he was first diagnosed.
Good luck to you – I think we need bad days every so often to help us process and come to terms with this crap.
Erica
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- January 29, 2019 at 4:52 pm
My husband's SNB was 16 years ago, so things may be a little different now. When they did the initial surgery, they did a quick examination of the SNB and did not see any signs of melanoma. If they had, they would have taken out more lymph nodes. After the surgery, they did a more detailed (microscopic?) examination of the sentinal lymph node, and did find melanoma in the node. I suspect that only a small percentage of patients have different results in the final pathology report, but as I can attest, it does happen.
Scanxiety is no fun – I hope that you get good news soon.
– Erica
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- December 17, 2018 at 5:42 pm
It's been 16 years since we had the surgery, so things may have changed. As I recall, they did a quick check of the SNB immediately, so that if there was melanoma they could take out the adjacent nodes and not have to do another surgery. In our case, melanoma was found in the node when they did a microscopic analyis. I think the second surgery was ~2 weeks after the first.
With your husband's mole on his back, I wouldn't think that there will be much recovery time. Do you know if he will be getting a skin graft? Ours was on the front of the ankle, which has no "flesh" to support the graft. David's graft became infected, and we did not know what to watch out for and he lost the graph. Ultimately we allowed the skin to grow back on its own. You shouldn't have those issues with the mole on the back.
I feel your pain with this diagnosis while you have such a young family. We found out about the melanoma and our first pregnancy on the same day. Crossing my fingers that the SNB is negative!
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- November 15, 2019 at 5:04 pm
Judi, do you think that the steroids caused the sepsis? With David, he had the sepsis after his Nivo infusion. So in our case, the steroids are keeping him from going back into sepsis. One of our problems is how quickly it goes from mild symptoms to life threatening, and that his doctor’s don’t seem to realize this. Hopefully we will make progress with the oncologist next week. -
- November 14, 2019 at 3:44 pm
David is not currently taking any antibiotics, although he was on IV antibiotics in the hospital and did take antibiotics after he was sent home.The pulmonologist also suggested that hydrocortisone might be a good option. She does seem fairly knowledgeable, more so than his oncologist. Problem is that both she and the oncologist are so booked up that David is not getting the attention that he needs. He does have an appointment with the oncologist next week. I’ll have him ask her if she thinks endocrinology might be a better way to go, but I suspect we will be in the same boat – wait 2+ months to get an appointment.
At 15 mg of prednisone, David is back in the hospital. Even at 20 mg, he was becoming symptomatic again. I did find a paper on-line that had a proposed treatment for his situation, which had a much higher dose of prednisone (60-240 mg, depending on symptoms). Even at 40 mg, the side effects are bothersome, so I think we will try 30 mg for the month while we try to find a doctor who is more responsive. It’s worrisome that the CT showed pneumonia – we don’t know if this is a remnant from the last hospital stay, or something that had resolved and is now recurring.
Thanks for the responses!
Erica -
- May 21, 2019 at 3:07 pm
My understanding is that they can prescribe a round of steroids when the side effects get too severe and then resume the immunotherapy. That does not impact the effectiveness of the treatment. Also, more adverse reactions too the treatment usually correlated with higher response rates. It’s a hard balance, side effects versus disease progression.Our issue is that it is impacting my husband’s liver, and that is usually grounds for discontinuing the therapy.
I hope you hear good news from your father’s Petscan. David’s response rate was excellent after two IpiNivo infusions, followed by 6 weeks of steroids.
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