Mylo Fibrosis, et al

[luvinretirement]

Hello. I'm new to this community and frankly new to social networking on health. My abbreviated story is that I transitioned to Mylo Fibrosis (MF) a few years ago, after dealing with Polycythemia Vera (PV) for 25+ years (I'm 66 years old). The PV regimen was inclusive of Phlebotomies, meds such as Agrilyn, etc. I have been on several meds for the latter stages of PV, and now MF, including Jakafi (which worked well), but my incidents of Squamous skin cancers went up, which is a known side effect. I have been dealing with skin cancer abut as long as PV/MF, so my Oncology team has discussed what, if anything, can be done to taper off the number of Squamous skin cancers, as I have been having 3-6 per year the last few years. Kind of a double whammy. I have other issues as well, but the MF and skin cancers are the biggies. One concern that has arisen the last few years is my weakening Immune System. I looked into Immuno Therapy, but I was not a candidate. My Oncologist recently mentioned the possibility of IVIG treatments depending on how my Immunoglobulins check out. Sounds like a monthly IV treatment to bolster my Immune System. Does anyone have any experience with IVIG, or any other treatments to bolster the Immune System?

[George1976]

I haven’t tried IVIG yet because it has not been determined that it will be useful plus there’s a few serious risks with it from what I hear. Squamous cells. I’ve had 5 in the past 3 years, 2 as I was ending Pegasys and 3 more since starting Hydrea. iMO non melanoma skin cancer is primarily from too much sun especially when on medications that increase sensitivity to sunlight. Even BP meds do this. Then when you’re on meds for an MPN it not only increases sensitivity to sun but it lowers your white cells and they are toxic too especially Hydrea. So I’d suggest covering up and or staying out off the sun when the UV index is more than 1, drink a lot of water to keep hydrated and see your dermatologist every couple months so they can treat pre cancers asap before they get to the cancerous stage.

[luvinretirement in reply to George1976]

Thanks for the feedback. I'm researching the pros/cons of the IVIG, and my Oncologist is not pushing it, more suggesting it as I've really had a rough time shaking sinus infections, and other issues, over the last 2-3 years. As for the Squamous cell cancers, I didn't mean to imply they are the result of the meds, but just more frequent. I spent way too much time in the sun as a child and young adult, without protection. I definitely lather up now when in the sun, and I avoid it in the Florida summer when I can (golf clubs gather dust until the fall!). I see my dermatologist quarterly, and never escape without 10+ feezings of the pre-cancerous spots, and 2-4 biopsies. I think I've single-handily financed his boat or car! The journey continues. Thanks again.

[George1976 in reply to luvinretirement]

Just a thought here but you may want to be careful with the antibiotics if you’re taking any for the sinus infections. They can cause some trouble with your immune system and also make you sensitive to sun. If you took any (tetracycline?) for acne as a teenager and also got overexposed to sun at the same time it probably explains some of what you’re going through now. Might check into homeopathic? Docs and or nutritionists to see how to get your gut flora balanced and I think vitamin c can add a bit to your wbc.

[luvinretirement in reply to George1976]

Thanks for the feedback. I try and avoid the antibiotics when I can, but a Z pack is sometimes required to eliminate the infection. I know there are studies that say you can just let the infection run it's course without taking the antibiotics, but with my poor immune system, that's not always possible. No acne as a child, and Homeopathic doc is on the to-do list.

[hunter5582]

Sorry to hear about the progression of the MPN and the troubles with skin cancers. Unfortunately, both HU and RUX come with this risk. If you are not already seeing a MPN Specialist, this would be a good time to get a second opinion. There may be additional options to treat the myelofibrosis that would work for you. Possibly, one of the meds in clinical trials could be considered.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

Wishing you all the best.

[luvinretirement in reply to hunter5582]

Thanks for the feedback. I've actually been seeing a separate Bone Cancer (and JAK2 mutation) specialist at Moffit Cancer Center for 2-3 years now, who I'm trying to reach out to now. I'm not in a hurry to start the IVIG, but quality of life is starting to suffer with my inability to fight off infections. Just another one of those life's decisions. I'm thankful for every day that the MF doesn't progress. Thanks again.

[paul0749]

I had PV for about six years treated primarily by Hydroxyurea. It turned into MF around 10/22 following my bone marrow biopsy. In May of 10/22 I started taking Jakafi. After about six months my immune system started weaking with more fatigue and skin issues. Also blood stats didn't look much better. My Oncologist suggested I go to Mayo Clinic in Rochester MN. My Mayo doctor called Jakafi "poison". Over a period of four months I was taken off of Jakafi. I also started receiving a weekly injection of "Procrit". I now feel the best I have in four years. Hemoglobin and platelets have improved significantly. My skin issues are improving but Hydroxyurea also cause a lot of skin issues. Ther are two new drugs that are supposed to be way better than Jakafi. Not sure of the names. I'm back to golfing twice a week.

[luvinretirement in reply to paul0749]

Thanks for the feedback. Your journey sounds quite similar to mine, except it took almost 30 years for my PV to transition to MF. I was never told the Jakafi was poison, but it was a bio-engineered drug brand new on the market, so I don't believe much was known about it. I transitioned to Jakafi after having a bad reaction to Hydroxyurea (diffused pain all over my body...very strange). Anyway, I'm on a drug called Inrebic now and the hope is that the skin cancer incidents will decrease after a couple of years. I will definitely look into the Procrit injections. My wife agrees it could help as it improves kidney function, which is one of my auxiliary issues (less than ideal kidney performance). I was golfing twice a week not that long ago, and would love to get back there again! Thanks again!

[paul0749 in reply to luvinretirement]

My doctor used the word "poison" to express his dislike for Jakafi. Jakafi also causes severe diarrhea and constipation for many. After two months of getting off of Jakafi, I have had no problems. I have three Oncologists. One at my MN home, one at my CA home and Mayo Clinic in Rochester MN. They collaborate. I would suggest getting a second opinion if you haven't already had one. Good luck.

[luvinretirement in reply to paul0749]

Thats the plan...thanks!

[katiewalsh]

Hi. I’ve been getting treated with immunoglobulins for around 15 years. I have Common Variable Immune Deficiency (CVID) which means my body doesn’t produce enough antibodies. There actually are are a number of MPN patients with CVID. I started getting them monthly as IV treatments but then switched to sub-cutaneous treatments I can do weekly at home. My MPN (MF) was diagnosed about 10 years ago. They can tell through blood tests if you’re deficient in any of the antibodies. Treatment is pretty simple. Katie

[luvinretirement in reply to katiewalsh]

Thanks for the feedback. I've never been told I have CVID, but of course that means little. I'll definitely look into that while seeking counsel on the overall Immune System deficiencies.