Newbie on Ibrutinib: Diagnosed in the fall of... - CLL Support

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Newbie on Ibrutinib

kirkdr
kirkdr

Diagnosed in the fall of 2013. Six rounds of chemo over 6 month period in 2016-2017 proved unsuccessful. Started on Ibrutinib capsules (3 per day) in June 2017 and with the exception of shifting bone pain, more frequent bowel movements and itchy bumps/minor rashes, the results have been very good. Wish that I could have skipped the chemo and gone directly to Ibrutinib but then again.....who knew?

Shifting bone pain has lessened significantly however itchy bumps and more frequent BM's continue.

Continue to see the oncologist every 3-months.

12 Replies
cllady01
cllady01Volunteer

If the itching is too severe and you feel you must scratch, please contact your oncologist asap to get something to relief the itching. With a lowered immune system scratching can become infected.

kirkdr
kirkdr in reply to cllady01

Thank you, I will.

Glad to hear you're getting good results on ibrutinib. I have too. I started Sept 2017. Too bad about the side effects you're having. Hope you get some help with those. It's useful to have a CLL specialist you're seeing periodically, not just an oncologist. Good luck to you! ~kim

Jm954
Jm954Administrator

Welcome to our CLL community kirkdr.

We have a lot of members on Ibrutinib and I’m glad to hear the Ibrutinib is working well for you.

Best wishes

Jackie

Wish that I could have skipped the chemo and gone directly to Ibrutinib but then again.....who knew?

In 2016, a lot of people knew. But glad you are doing well on "I" now. Some people are getting good efficacy on 140 mg per day, which may lower longer term side effects.

Hi itchy/dry skin there’s no prescription medicine:EUCERIN itch-relief moisturizing spray. Stay cool we are all in it-together. StasiaURos

Good morning. How is your energy? I’ve been on Ibrutinib for 3+ months. I have felt great from the beginning of treatment. I do have occasional joint pain, some hair loss and very dry skin. Having my energy back is worth it all.

Keep us updated on your progress.

Pam

My energy level is quite good and has been since I've been on ibrutinib. I can imagine that seeing a CLL specialist would be beneficial but don't know how to politely request such.

I'm curious to know how many patients on ibrutinib for greater than a year are required to see their oncologist every two months. It seems to be a little excessive.

lankisterguy
lankisterguyVolunteer

Hi kirkdr,

I see that you joined us 2 days ago, and it is great that Ibrutinib is working well for you.

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Your questions appear to be appropriate, but it seems you are not yet in a comfortable assertive role with your doctor. You should be able to talk about your questions openly with your doctor, without feeling submissive or deferential.

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How to proceed with getting a 2nd opinion depends mostly on your insurance or health care system (I'm not certain which country you are from?) - Please edit your original post to lock/restrict it to our community. See item 4) on this pinned post:

healthunlocked.com/cllsuppo...

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and let us know where you live and what rules you must follow.

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In your original post you indicated a 3 month follow up, and this later question mentions 2 months.

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My experience - having had 6 rounds of treatments over the last 10 years, with 4 different novel/targeted drugs (no chemo), is that my CLL expert doctor suggests a 1 month follow up after each major change of treatment, or significant change in results (good or bad). Then as things calm down we go to 2 months, then to 3 months. But he always reminds me to shorten the time span if anything unusual is happening.

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Len

Hi Kirkdr,

I've been on Ibrutinib for almost 2 years now. Symptoms do get better with time however I still have little joint/bone pain and bowel issues but no where near what it was at the beginning so it's all good. My lymph nodes started going down within a week and my numbers are holding strong, very thankful for that.

As for a CLL specialist, I had not thought to get one till I joined a few groups and it was plastered everywhere "see a CLL specialist before starting any treatment". When it was time to treat, my local oncologist suggested FCR. I wasn't to sure if that was the right thing for me so that's when I suggested to my local oncologist that I wanted to get another opinion from a CLL specialist for peace of mind. They work with each other on my behalf. Once they did all my blood work before starting treatment, it turned out that my IgHV was unmutated therefore my specialist said that FCR would not give me a good response and she suggested I do Ibrutinib instead. My local oncologist is great but she deals with all cancers where as the specialist deals only with CLL patients. I travel 2 hours to go see my specialist. I try to go at least twice a year and will go more often if I feel the need to.

As for how often I saw my dr after starting treatment, 1 week, then 2 weeks, 1 month, 6 weeks, 2 months, 3 months, 4 months and was always told I could go in if ever I had any issues. At this time I have good insurance so I chose to go every 4 months instead of waiting the 6 months. I had surgery and they had me go and do just blood work to make sure my numbers were ok, I thought that was a good idea too. I was feeling fine so there was no reason to see the dr but they wanted to just check my numbers.

You have to look out for yourself, no one else will, so don't be afraid to tell your dr how you feel or what you want to do, it's your life!

Best Wishes!!

tee10
tee10 in reply to tee10

Oh sorry I forgot to ask you, do you know your IgHV? are you mutated or unmutated?

re itchy bumps - I got small bumps after starting imbruvica. The bumps would itch & could be days to weeks before they would go away. The bumps were small red 'braille' size raised bumps. I figured out it was skin irritation from rubbing my inner arm with the disinfectant before a blood draw since the bumps followed that path of where the disinfectant was applied. The other place I got it was on my hands when I ate potato chips or anything in a plastic foil lined bag (like chips all come in) or foil lined can and my hand would contact these foils.

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