Lots of bad stuff happening, what to do?

[Androg]

I was diagnosed with ET close to 3 years ago, January. Put on Hydroxyurea, 500mg 3x a week and all seemed good with platelets.I just turned 69 in October, am a woman and had a heart attack in September from a blocked artery. A stent was put in and I am on drugs to help lower blood pressure, Baby aspirin + Plavix and a statin and an anti blood clot until next month -to make sure no clot forms in the stent.

Yesterday I had Mohs skin cancer surgery on my nose for a basal call carcinoma.

It's hideous and sore but my reason for jumping on was that I'm wanting to get off of the Hydrea because I'm certain in my mind that it started my skin cancer & I'm afraid of melanoma or even another basal cell!!

I see my haematologist on the 20 th & already called to say what my situation was, so while he recommended through his nurse that I stay on Hydra, I am not willing to wait to find more skin cancers cropping up .

Because of my heart condition now, I am limited on what drug he can offer. I feel very much in a bad place right now on what's next and how to navigate all the new events. I've also had arthroscopic surgery on my knee to shave a flipped meniscus and it's still painful and is not bending or straightening after round after round of physical therapy......a new MRI is this Saturday, so it's one more issue separate but adds to the stress.

Anybody's thoughts on switching from Hydroxyurea to ??? Personal experiences?? Oh, I have pre MF, but the specialist I saw in the beginning of this journey said my treatment was centered on the ET for now.

It's been so much, all at once & I'm needing guidance and came here because I know you all have dealt with & are dealing with this uncertainty yourselves 💝

[hunter5582]

Sorry to hear things are piling on top of each other. Been there. Done that. Have the t-shirt. BURN that T-Shirt!!

Given your history of a heart attack, blocked artery, and ET-preMF, it is clear that cytoreduction is indicated. It is unfortunate that the HU appears to have caused a skin cancer. It is quite understandable that you would be reluctant to continue on HU. It is critical that you review your situation with a MPN Specialist. You have a complex case that needs MPN expert input.

There are other options for cytoreduction. Anagrelide seems unlikely due to the specific risk of cardiac issues. Pegasys comes with a caution for cardiac disease but can be used depending on your specific situation. Jakafi also comes with a similar caution. Besremi and bomedemstat are both in clinical trials for ET, but you may not be able to participate in the clinical trials for those two options.

HU and PEG seem like the most likely considerations for treating the ET. You would need to compare the risk of more skin cancers with HU to the cardiac risks associated with PEG. This is not a black-and-white decision. Your risk tolerance needs to be considered. The contraindications/cautions for each medication also need to be considered. This is a tricky decision for you and your care team.

My own experience with HU and PEG is that PEG was more effective and easier to tolerate. I do also have a cardiac condition, atrial tachycardia. It is very important to note that this is my experience with these two medications. You cannot apply my experience to your situation. We have two different profiles. When examining all the the options you have available, you will need to engage your care team in deciding on what is best based on your MPN health profile.

I have had a meniscectomy on both knees. This has naturally lead to arthritis on both knees. The very good news is that I responded very well to hyaluronic acid injections into the knees to deal with pain that results from the loss of part of the meniscus. I was just at the ortho-doc today. Time for another round of injections. Be patient with the recovery from the knee surgery and keep at it. It takes some time to recover. I have also found massage therapy to be very helpful in managing the situation. Gentle exercise like Qigong also helps. You have to keep moving to keep moving.

Wishing you all the best as you move forward. Please do let us know how you get on.

[Androg in reply to hunter5582]

Perfectly put Hunter!I had considered 'possibly" asking my team (not the specialist, but may get an appointment 3 hours away that I had seen at my first diagnosis), IF I might reduce the HU to twice a week rather than three because I'm on a clot reducing medication, Plavix. My platelets would be higher of course (they have been very steady at 385).

The risk of skin cancer is real for me now but heart is a very important consideration!

I thought about reducing HU and being hyper vigilant about skin monitoring, Sun avoidance/protection??

They may not go for that, and I'm fully expecting that to be the case, but having less of a cytotoxic drug in my system seems logical since I've had a clot reducing drug to the mix.

Any thoughts on my proposal? I don't consult with my haematologist until the 20th of November, so I can do more research into Peg & its heart safety profile.

Thanks for the tips on what has helped your knees too! And I WILL be throwing away that T- shirt, that's brilliant 🥰

[hunter5582 in reply to Androg]

Your situation is a conundrum.

A very definite YES to sun protection, especially while in HU. We all need to be careful about sun exposure anyway.

Suggest that when consulting with your care team that you bear in mind that you are the Captain of the team. It is the providers job to educate, advise and consult. It is your job to decide.

I have no way to know whether dropping back on the HU dose would make any sense for you. I would note that while many doctors still use 400K as the platelet target, it is acknowledged that there is no particular value to that number. There is no linear relationship between platelet numbers and risk of thrombosis. What matters is preventing thrombosis, hemorrhage and other symptoms.

My suggestion would be ro review your treatment goals, risks and actual adverse effects encountered with your care team. Perhaps a new treatment approach is needed. Perhaps continuing on the current course with greater care to avoid the skin cancers will be best. Ultimately, the decision rests with you, based on your preferences and assessment in consultation with your care team about what makes the most sense.

All the best.

[Androg in reply to hunter5582]

I feel just like that too....consult & evaluate. I have read that higher dose of HU increases skin cancer risk, but it's not a "one problem" situation as you're saying....sun protection & monitoring is a definite.I appreciate your input. Not really having someone besides doctors to mull this over has a calming effect!!

[Norma1831 in reply to Androg]

Androg, many thanks for drawing attention to the increased risks of skin cancer based on your own difficult experience. Valuable to know this as I had noted significantly increased redness and reaction to sun exposure, even wearing SPF 50, while taking 500mg Hydera daily.

[JustKeepSw1mming]

Hi Androg,

Very sorry hear about your troubles.

I am just about to start HU myself for the first time.

I am not nearly as knowledgeble as Hunter and some other members, but just wanted to say hang in there! You are not alone and this group is full of wonderful and inspiring people. Reading posts here helped me a lot.

Hope your MPN specialist will work together with you to find the best option.

Take care.

Mary

[babs1922]

I am on HU 5 x 500mg per week and have had quite a few skin cancer issues.

I read a credible article in the media about taking B3 niacinamide daily - article stated it could reduce skin cancer issues by 25%. My skin dr also talked about this supplement.

Approximately six months down the track I am confident it has made a real difference. Worth checking out.

[Androg in reply to babs1922]

Thank you for this information! I am going to do that....easy & if it can reduce the incidence of skin cancer, even by 25% them I'm ready!! Thanks again for spreading what you've read

[babs1922 in reply to Androg]

Be sure to get b3 niacinamide NOT niacin

Also, one of the good things is that b3 is not expensive!

[Mrs_Average]

Hi, sorry you are having so many issues all coming at once . It makes it harder to think about the right next steps. As others have said use your medical team to navigate pros and cons of all the options to get the best balanced approach for you. Take care of yourself.

[Androg in reply to Mrs_Average]

I really appreciate your input & advice...take care too 🌷

[Gesha]

Pegasus!

[Androg in reply to Gesha]

Thanks, it's definitely something I'm going to look into

[Gesha in reply to Androg]

I've been on Pegasus for over 12 years. From 90 mg first year to 30. No side effects no nothing controlling platelets count very well.

[Androg in reply to Gesha]

Thanks, I'm going to ask if I can take it even though I've had a heart attack in September....that seems to be my only problem with changing from HU....but at least it's a good option that you've done well on 👍😃

[Wilma66 in reply to Androg]

Thank you!

[Wilma66]

Hi Androg,I was diagnosed with Essential thrombocythemia in 2014. The Hematologist started me on aspirin first and added Hydrea. I've been on 500 mg every day since. So far everything is ok. My numbers are stable. We moved to a different state and I'm seeing a new Hematologist. She said, not going to change anything because my numbers are stable. I'm 72 and I'm doing good. I wish you well 😊

[Androg in reply to Wilma66]

I wish you well too 🌷. Thanks for your story & glad you're doing well on this journey we share 💝