Hemoglobin

[Fant1924]

Dx in 2013 and have been treated with Ibrutinib then Venetoclax. Overall I have done well but over the last year my Hg has begun a slow trend of decrease, now in 11s. I realize that is not at all dangerous but I do get winded with any vigorous activity or when I travel to the mountains.

I take the B vitamins and a small amount of Fe but the decrease continues. I am visiting a CLL expert next week and I am looking for some solutions to suggest. I was at my usual Oncologist on Monday and picked up a copy of Doctor’s Notes to deliver to the Specialist. An entry I read there states that I had brought up the decline and the Note stated in caps that my Hg decline would NEVER return to normal or be reversed.

Was wondering what may be some suggestions, such as:

- intermittent steroids?

- EPO?

- other?

Thanks for any suggestions,

Dennis, 74, Venetoclax

[SofiaDeo]

What is your daily complete protein/micronutrient intake? IMO having excess "on board" of a number of nutrients is just as important as having extra iron. There are a number of nutrients needed to build our various cells/enzymes/tissues. If you don't have a need for protein restriction & have good hydration, I always recommend adjusting nutrient intake up a bit before trying the various drugs. You still need to be absorbing a sufficient quantity of "building blocks" before any drug is likely to be successful, too.

[cajunjeff]

Dennis, my hemoglobin has gone from 16 to 7 and now back up to 15. The dramatic drop for me was a bout of hemolytic anemia. Before then I was seeing a slower decline in hemoglobin following my Cll diagnosis five years ago.

As I am sure you know, our hemoglobin declines as we age, on average, whether we have Cll or not. A number in the 11s is not all that far off low normal for your age. I could write in the medical chart of any 74 yr old that their hemoglobin numbers will not likely improve and be correct, Cll or not.

Diet is our best bet. Meat, eggs, fish, leafy vegetables, green beans and broccoli are natural ways to help hemoglobin levels. Folic acid and iron supplements can help some.

I have found I function okay with hemoglobin over 10. I stay active too -working out, walking a lot and playing golf. I have not jogged in years, I am sure I would get winded easily.

Cll and aging both can take a toll on our hemoglobin. But I do think with diet and exercise we can keep hemoglobin at a level that allows us to enjoy most moderate, age appropriate exercises. We probably will not win any triathlons, even in our age group.

I wish I had more to offer. I think the most practical plan is to eat well, exercise and adapt to having a tad less oxygen than others our age who do not have Cll.

[cllady01 Former Volunteer]

Fant1924. Your Dr. is most likely saying your hemagloblin drop is not from low iron. And taking iron supplements when that is not the problem can give you other problems.

I am happy to hear you are seeing a specialist and be sure to ask for explanations for what you do not know. Make notes, so you can maybe get some more clarity from some on this site who can take some of the intricate medical terms and put them in more simple terms.

[mickimauser11]

I had this too due too high IgM Level can also happen with high IgG which coated RBC and later destroyed it

[Big_Dee]

Hello Fant1924

It would not be unusual for hemoglobin to decline with CLL. I had much the same reaction so I started walking 3-5 miles very day, this relived some of my breathing problems. I also increased my intake of red meat for added protein and iron. Your cells are protein. After treatment my hemoglobin came back to normal range from low of 7-8. I still walk 3-5 miles a day and eat red meat. Blessings.

[Ral1]

Hello, I have been on the venetoclax for my b-cell prolymphocytic leukemia now going on 7 weeks. The past week was the first week since mid September I have not required a unit of blood. Even though now average to me is between 7.5 and 9 my labs yesterday indicated my marrow is able to replenish due to the suppression of cloned white cells by the venetoclax (it was 9.1).. I know now and for the past year my hemoglobin levels will most likely run 30% to 50% lower than most everyone else. Albeit aggravating I have learned to adjust my level of physical involvement in areas. Pace yourself, use your mind more intently, impart wisdom, experience more of the presence. Peace.