Hemoglobin dropping

[aremmick]

My last visit to Mayo Clinic in Rochester MN my hemoglobin is now at 11.2. Small drop from previous visit, but doc thinks I should start Ibrutinib because I have some fatigue. No night sweats or increased size of lymphnodes. Is this reason enough to start Ibrutinib?

[Cllcanada Top Poster CURE Hero]

Not usually, drop in Hgb to under.8 might start treatment often platlets under 100... kicks off a treatment discussion.

Really depends on many other factors.. numbers are a small part of the overall picture..

~chris

[EugeneL2]

I copied this from a post by aussieniel written 3 years ago.

If you look at the post on the Patient Power interview with Dr William WIerda, you'll find your answers:

"If the hemoglobin drops below 10 or 11, that's when I start talking to patients about starting treatment. If the platelet count drops below 100, I start talking to them about treatment.'

healthunlocked.com/cllsuppo...

Generally, while CLL specialists start talking about treatment when platelets drop below 100, the point at which treatment really needs to start is 70.

[MsLockYourPosts Passed Volunteer]

You don't mention whether you are male or female and what in range is for your lab. At UCLA the bottom of in range for females varies from 11.1 to 11.6 depending on which of their labs is used and how the reader is calibrated. Frustrating when you are trying to track your numbers, as the portal reports the various lows in separate charts

[aremmick]

I am female and platelets are at 134. Doc just said he likes to start meds when hemoglobin is at 11. He said Ibrutinib and an anti viral med is what he prescribes. Having a hard time with taking meds too soon, since he said would be taking indefinitely.

[MsLockYourPosts Passed Volunteer]

I know that the Mayo has amazing hematologists. They got my cousin through transformed Follicular lymphoma, and even they are amazed at how well he is doing, but is your doctor there a CLL specialist?

My doctor was not concerned when my HGB went into the 11s back when I was diagnosed (it had gone as low as 8) and in those days the bottom of in range for women at my labs was 12. It now sits just above or below 11 (has for a few years) and I have been reassured by two specialists that, though I would like it to at least get into the 12's, the current count is not a problem.

Not everyone has enlarged nodes. Where are your ALC (absolute lymphocyte count) and ANC (absolute lymphocyte count) and what is the pattern there? Ignore the percents. Do you have HGB levels over time? Have you had a recent FISH test? Counts can change, so you need a current one.

There are some CLL specialists who seem to think that starting treatment earlier with Ibrutinib is the way to go, but I believe most still think that it is a combination of factors that triggers a treatment discussion and decision.

Given my experience of being rushed into treatment by an oncologist who really didn't know CLL, I tend to suggest not letting anyone rush you into treatment, and to get second opinions. I did need treatment, but I was started on absolutely the wrong thing for my very atypical case.

[db601 in reply to MsLockYourPosts]

☝️ditto! Cll is so different in each patient. It is reassuring to know you are at a first class center with specialist who have seen many patients.

For your emotional well being, a second opinion - from another prominent expert may be needed. Good luck!

db

[MonD]

My hemoglobin is at 10.3 and platelets are at 138. Spleen a little enlarged and lymph nodes a little swollen. Cll specialist is talking about treatment but I am uncertain as I feel fine! No infections, little fatigue, no night sweats, etc. not impacting quality of life (except anxiety) so resisting treatment. Waiting another 3 months to see.

[aremmick in reply to MonD]

Thank u, I feel the same way. I'm not going to jump into treatment, he did say it was my choice and wants to see me in 2 months.

[kathymac52 in reply to aremmick]

If things change, and you begin to get mouth sores, infections, etc....if minor wounds do not heal, any fevers etc.....go sooner than later.

[GMa27 in reply to MonD]

I have been on w&w 11 years. High energy. No infections, no sweats, nodes large but no pain. Enlarged spleen but had that for 11 years But my HGB down to 9.3. Been slowly going down over past 2 years. Going to get final second opinion in 4 weeks. They all want me to start treatment by May. Just waiting to hear which will be recommended. It's frustrating to think of treatment while feeling so great.

[MsLockYourPosts Passed Volunteer in reply to GMa27]

Ask about a full anemia panel if a low HGB is the only reason you are being given for starting treatment. There are other causes for anemia. You want to know as much as possible about the cause of your anemia before starting treatment

[aremmick in reply to GMa27]

I agree, don't want to start treatment b/4 I have to. Just wish there was a way to increase my hemoglobin naturally.

[Jm954 Administrator in reply to GMa27]

It’s so much more advisable to go into treatment feeling well as you will cope much better.

If you go into it feeling unwell it’s harder to cope with. Don’t wait until you feel dreadful.

[aremmick in reply to Jm954]

Thanks, just scared your start the journey😩 Pisses me off that the Doc said u could easily go 10-20 years b/4 treatment. Or u may never need it. So have the adjust since was diagnosed 2 years ago.

[Jm954 Administrator in reply to aremmick]

I know it's scary, being told you need treatment feels the same as getting the original diagnosis. Your Doc was probably trying to be kind when he said 10-20 years.

CLL is a fickle friend and completely unpredictable.

[MonD in reply to GMa27]

Keep me posted and let me know how you are doing and what you decided! Hope you are still feeling well!

[aremmick]

I do have insurance, just not sure how much it'll pay for these meds. Doc says they work with insurance companies, said would be affordable. He just said 1 pill per day and did not talk about dosage. Said would do a Ct scan to check size of lymphnodes and a bone marrow biopsy.

[Tom8O]

Hi! I was where you were a couple of months ago. HGB was 11.9 but trending down - docs said probably Ibrutinib (since I'm IGHV unmutated) in the next several months. Then a month ago I got AIHA (anemia) and HGB crashed to below 6. That was controlled with prednisone (and 1 infusion) and got on Ibrutinib within a week. Doing fine now HGB >10. In hindsight, I would have gotten on the Ibrutinib sooner (with unmutated it was probably inevitable anyway), but I guess the AIHA was random and not really predictable. Just a note - - in hindsight I probably should have headed to the doc a few days earlier to get checked out because the AIHA made me winded doing simple things like walking up stairs and I turned yellow like Homer Simpson.

I was looking at some of the clinical trials, but didn't have time to get on one quickly. I figure Venetoclax will be there for me if Ibrutinib doesn't do it. I've seen a lot of posts of Venetoclax getting approved even if not 17p-. Hoping it will get approved for more soon.

On the Ibrutinib, I have pretty good insurance that is supposed to be a $100 co-pay per month. However, the pharmacies help you out with "copay cards" that get that down even more (I'm paying $20.)

Good luck to all!

Tom

[kathymac52 in reply to Tom8O]

Tom,

What insurance do you have? Are you on Medicare Part D? We have Humana Part D, and our Imbrutinib will cost $5000 up front to get us into catastrophic, then $600 a month....we are getting some help with a foundation. Just hoping for next year, it will reduce with a better insurance company??

[Tom8O in reply to kathymac52]

Kathy,

I have Anthem through an employer plan / Navitus is the pharmacy provider. I guess that’s pretty lucky.

Even with the insurance it looks like the copay card (which I think is basically a manufacturer discount) covers a good chunk of the cost. I would ask your pharmacy to look into those. Diplomat is my pharmacy which Is in flint Michigan- they were very helpful.

Tom

[kathymac52 in reply to Tom8O]

thanks Tom.....we are on Medicare Part D....and Diplomat is our pharmacy as well......just looking for more help/...my husband is on his 3rd day of Imbrutinb.....

[Quarry]

I fail to see a small drop in HB is the sole reason for Intrutinib treatment. You need to understand what else is going on. Why is HB dropping? What else is going up/down (eg reticulotytes, LDH, Bilirubin, Lymphocytes? Is spleen swelling? What colour (normal or not) are the whites of your eyes, urine, face etc

As said above, it could be AIHA. If so Intrutinib is wrong starting point.

[jer4351]

I an also a patient at Mayo and relieved to have such excellent care. It was suggested in January that I begin treatment with Ibrurtinib and I passed, not wanting to commit to the every day/forever therapy regime. And no push back and started instead with gazyva with an excellent response.

I have also learned of some really dire side effects with some patients on Ibrurtinib which further convinced me to go slow with the latest promising therapy.

R.

[aremmick in reply to jer4351]

That's how I feel, which doctor do u see at Mayo? I'm also afraid of possible side effects.

[GMa27 in reply to jer4351]

What is gazyva!?

[AussieNeil Administrator in reply to GMa27]

Gazyva/Obinutuzumab is a CD20 monoclonal antibody - a second generation version of Rituximab/Mabthera. Lots of information on this and those using it in trials here: healthunlocked.com/search/g...

[Cllcanada Top Poster CURE Hero]

Foods to avoid on Imbruvica (ibrutinib) are Grapefruit and Seville oranges aka orange marmalade..., Noni juice, pomegranates, starfruit, and St. John's Wort.

There are also over 400 drugs that interact with Imbruvica (ibrutinib), so p,ease discuss ant new drug prescribed for you by any doctor with your CLL specialist... Don't expect a GP for example to know anthing about these contraindications ..this is vital for many antibiotics especially CIpro and other floroquinilones...

~chris