Problems but not Cancer Returned

[buffcody]

The last scans, MRI and PET in June, confirmed 12 months without evidence of a recurrence. Dr. Lao felt that I would soon move from scans every 3 to every 4 months, and I am now only seeing him every other month. No problem there.

The problem(s) is one I described late last year and felt was gone the last time I posted about my own situation back in April.In fact even in February most of it had cleared up. The last month and a half or more, though, it's returned full bore with no clear diagnosis of what has caused it and, so, of course no idea of how to fix it.

It could be that it has nothing to do with my year of nivo or my couple of months of ipi, but I have been the poster boy for immunological side effects including type 1 diabetes, thyrotoxicosis, adrenal insufficiency, pancreatitis, and hepatitis.

What's going on is what I reported late last year-- extreme pressure in head and sinuses, exhaustive fatigue, feeling like I am on a trampoline while walking (no vertigo), and feeling very unsteady when standing especially for the first couple of minutes. I seemed to get much better in the winter when I started taking mega doses of iron for an iron deficiency anemia and using some over the counter remedies for my sinus issues and gradually increasing exercise levels. But now I feel despite continuing to do those things, they are not helping much at all.

Dr. Lao, who is as baffled as I am with all this, feels that this might be an immunologically caused overreaction to my sinus problems, which do continue. But my case does not fit into any of the lists of side effects that have been publicly noted. He has not seen or heard of anything truly comparable.

I'm getting second opinions from a new ENT as well as regulation of my thyroid medications because of some dramatic change in my thyroid function numbers between the time I was feeling much better and a more recent blood draw. So there are things yet to be explored in the next two weeks. After that....???? Catherine spoke of my going back to Sloane, which I used as a second opinion a few years ago in the early days of the disease, but I don't know if a melanoma specialist there would be able to discover any more than the team here. Others have suggested Mayo or Cleveland Clinic for a general evaluation. Or patience?

Frank

[Catherine Poole]

Mayo and Cleveland Clinic are great places but not for melanoma as Sloan. Maybe finding a very smart ENT is the answer. I do think a very judicious doctor who is looking at the whole picture may be helpful but I'm not saying that your current doc isn't doing the best. I would at least contact Sloan and see where they think you should head. You have your foot in the door there. The other idea would be Keith Flaherty at Mass General who I believe to be quite brilliant. Email a quick paragraph of the issue. I will help you research it and you know you are welcome to call me.

[cancersnewnormal]

As I was nearing the "end of treatment" for Keytruda, I found myself with several late developing issues... Inflammatory arthritis and pancreatitis being the primary problems. Oddly enough, my right sinus had become a really personally irritating issue. I asked my radiation oncologist to show me my sinuses on my brain MRI, and it was quite clear that my right sinus was swollen. I was using saline rinses, had been through two rounds of antibiotics, and was needing "breath right" strips on my nose at night to prevent complete blockage (and horrific snoring, ha!). My oncologist was baffled by it. He noted that none of his other patients had encountered this issue. Unlike you, I'm not the poster child for side effects, however, my onc has called me "the statistical outlier to anything and everything taught in the books". I think the sinus issues could potentially be a rare, or possibly just severely underreported side effect of a late stage autoimmune adverse reaction. Oddly enough, the sulfasalazine that the rheumatologist put me on to counter the inflammatory arthritis, cleared my sinus issue completely! I know there is a slight anti-inflammatory part to sulfasalazine, as well as its immune "calming" side... but naproxen, ibuprofen, and aspirin did nothing to help my swollen sinus... yet that old school rheum drug helped clear the problem. Weird. I am not at all a fan of steroids, but I often wonder if a short dose of Dex would have taken care of things too. As a side bonus, my ears haven't been quite right since late into Keytruda either. I've been off for two years as of July 5, and they still aren't "normal". I haven't had the vertigo issues or dizzy troubles that you've encountered... but then, my thyroid meds remain in good balance, and extra B12 doses have helped with anemia side effects... so I wonder if your troubles are all connected, or are a party of separate autoimmune reactions. I never saw an ENT. I'd be curious to know if/what they find!

[buffcody]

Niki,

Your account is absolutely fascinating, though I am sure you are not happy that your life with Keytruda and melanoma has led to this. It is also promising for me that through it I may find something helpful for my own situation. I've passed on your reply to my oncologist, Chris Lao, in Ann Arbor, who told me on the last visit with him that he saw my situation as a possible immunological over response, but one that he had not seen before.

I did have a meeting with an ENT physician assistant earlier this week here in Kalamazoo. She had the results of a very recent CT scan of my sinuses and had discussed my case with the doctor I have been trying to see for the last year plus. He is still not going to see me, since he and the assistant discussed my CT scan and agree there is no grounds for surgery. I am suspecting now that it is only surgical candidates that he sees these days.

She emphasized that my sinuses look pretty good, and that there is no blockage. I'll take her word for it. I can't read those CTs that well myself. She emphasized my need to see an allergist and to get allergen testing and probably to go through another round of allergy shots. It will be my third if I do so. Once when a kid, once in my early 40s, 30 plus years ago. She also was sure that deconditioning was my 2nd problem besides allergies. I told her I did PT twice a week (with a therapist). Her comeback--you should get it every day. ??? Do you know any therapists who see clients on the weekend? Anyway, no more visits to ENT folks for me. I'll just continue to take all the over the counter stuff they have recommended since I do continue to have sinus problems.

I am doing somewhat better, though, than I was when I posted a few days ago. But whatever the problem I have is it has stuck around. So I continue in the quest to find a solution while waiting to see the allergist and doing my PT exercises every day. I'm curious is you ever got a complete blood workup for various signs of autoimmune disorders. I did and had some abnormal readings, but none of them pointed to a specific disorder. If so, and you are willing, let me know what came out as abnormal. And to save the Forum readers, maybe do it through an email that you will find for me on the site. Thank you so much for sharing this with me. Frank

[buffcody]

Niki,

I sent your comments/case on to my oncologist. He replied that many patients who have been through immunotherapy regimes have experienced inflamed sinuses. But, whatever is going on with my sinuses, mine are not inflamed. I presume he knows that from observation rather than scans?? I guess I thought my right sinus was inflamed.

Frank

[PhillyRed]

Hi, I had posted a possible cause several months ago when you started to report on the forum about your vertigo/dizzinesss and its possible cause from a sinus infection or sinus inflammation. Since sinus infection/inflammation now appear to be ruled out, you may want to pursue investigating another potential cause. Your symptoms may be caused by damage to structures of the inner ear in the absence of an infection, eg, loss of inner ear hair cells or misalignment of the calcium crystals in the inner ear. Such inner ear changes can be caused by certain classes of antibiotics, certain chemotherapies, or other drugs. I have not heard, however, that such changes can result from immunotherapy. An ear, nose, and throat (ENT) physician could diagnose if such inner ear changes are present and contributing to your symptoms. In some cases the doctor may be able to prescribe vestibular rehabilitation and physical therapy to ameliorate the symptoms, which may be able to realign the calcium crystals to the correct positioning within the chamber of the inner ear. It may be worth it to check out this potential cause with an ENT. Best of luck.

[buffcody]

Thanks PhillyRed,

I did take note of your earlier responses. I had an experience of the condition you describe back in 2014, and I was sent by my local ENT office to physical therapy to help alleviate the condition. The abbreviation for the cause of the vertigo that I was experiencing was BPPV. The therapist and his work with me, including the rearrangement of the crystals in the ear, proved very successful within a month or so, and I have not been bothered by this problem since. When I first tried to get in to see the ENT last year, his first reply was that I should go back to the PT. Unfortunately, my primary care doctor who made the referral said that I was bothered by vertigo. I never said this and this recent experience was much different than in 2014. The term "dizziness" is sometime used synonymously with "vertigo," but it is also used more generally to refer to a sense of lack of equilibrium or lightheadedness. My "dizziness" was of the latter type. In fact, I stayed away from using that word to avoid the confusion. I never really found a word that I felt was truly descriptive of how/what I felt.

So the repositioning of the crystals would not help this time around. Wish it would. However, better news is that I have been feeling much better the last 2 weeks or so. I wish that I could pin down which of the various changes I have been making such as medication, exercise, or air conditioning for removal of pollen that has been the market maker but I am not 100% but a good 70% better than I have been since early May. So whatever I have been doing or not doing I plan to keep moving in that direction. Feeling better has also allowed me to increase my activity level and exercise, and I am sure that is playing a significant part. Frank

[PhillyRed]

Thanks for your detailed reply Frank. Glad you are considering everything and leaving no stone unturned to solve your medical mystery. After all you have been through, you deserve to feel GOOD! I hope you will continue to feel better and steadier on your feet. And I agree with you it is hard to describe and characterize the odd sensations of vertigo, dizziness, spinning, lack of balance, etc. Hang in there. I hope it will eventually resolve.