CLL Symptoms Question

[Estate1]

I was diagnosed 2 years ago with CLL and start treatment (BR) in January. I have some strange skin rashes, scalp, ears and general itchiness. Also a new problem with hemorrhoids? Unrelated to CLL? Thoughts? Thank you.

[seelel]

With CLL the immune system is functioning below par, so skin disorders can establish in the absence of full immune surveillance. Yes - itching can be a nuisance, but not serious.

If it gets worse you might want a dermatologist to identify exactly what's happening.

[Estate1 in reply to seelel]

Thank you.

[Jm954 Administrator]

Remember that not everything we experience health wise is related to CLL. Can I suggest you get it investigated as anyone without CLL would and talk to your GP/PCP.

[Estate1 in reply to Jm954]

Thank you Jm

[Upthenorth]

I experienced “hives” frequently; itchy, spread generally on warmer body parts—stomach, upper thighs, elbow creases. While my Dr. said it wasn’t related to CLL, I haven’t had a breakout since I started ibrutinib. I did not experience “hives” before diagnosis. A coincidence? I think we all have unique body chemistry, so our symptoms will vary. In my case, it seems possible that itchy, red, randomly expressed rash was connected to my “unfortunate condition (CLL).

[Estate1 in reply to Upthenorth]

Thank you Upthenorth

[Billhere]

All me a tiny bit of humor Estate1 - I think we are all united in the experience that SLL/CLL is a “Royal PAIN IN THE ASS”.

[Estate1 in reply to Billhere]

Hahaha! Agreed Bill and thank you for your sense of humour.

[BeckyLUSA]

As stated above, if you are planning to go from advantage to a supplement, they will ask health questions, but not if you are changing plans within the same company. It is my understanding that if you stay with the same company, they don’t ask the health questions. Somebody correct me if I am wrong. My husband got an advantage plan, but was told he could move to a supplement as long as he stayed with the same company. I

For me, I was diagnosed just before applying for Medicare. My insurance specialist suggested that I do the supplement as it would reduce the out of pocket on the expensive medical proceudures that would probably be required. It is Cadillac coverage, It is expensive, I pay about $328 a month between what Medicare takes out of my check and what I pay for my supplement and drug plan; however, in the two years I have been covered, I have yet to pay even 1 dollar in medical expenses. This includes monthly doctor visits, IVIG every 6-8 weeks and all testing, scans, etc. I have minimal drug expenses, since I am on a trial, and I have no idea what I would be paying out of pocket for Ibrutinib and Venetoclax...I shudder to think of it.

For me the supplement has definitely saved me a lot of out of pocket expenses. Each person is different. I found a Medicare insurance specialist to be extremely helpful. I did not have to pay them, ultimately, the company I chose paid them. I would definitely look for a specialist to help.

BeckyL USA

[Estate1 in reply to BeckyLUSA]

Becky I live in Alberta Canada where healthcare and approved drugs are paid for by the government. My chemo drugs B/R are covered. I am thankful for the healthcare system in Canada and particularly the Province of Alberta.