Chronic anemia + sluggish bone marrow = frequent transfusions

[jml]

Hi Friends~
Would love to hear your opinions, feedback, suggestions...
After all these years on treatment, my bone marrow is just not able to keep up and I'm chronically anemic, especially these past 2 years. So fearful of developing MDS (like Robin Roberts) but I'm not going to borrow problems from tomorrow that I pray never come.

When I was first diagnosed 11 years ago, it was standard to pre-emptively treat with Procrit, then more recently Aranesp, but in the past year & half my cancer center opts for transfusions vs. epo. Apparently their stance is that the risk vs. reward is too great. I can't argue with that.
Fortunately there is no limit to how many transfusions one can have, but it's a pretty arduous process. First you have to get so symptomatic and your H&H have to fall low enough before they'll transfuse. It's such a bummer to know that you have to feel your energy deteriorate and the symptoms increase before you can get to the solution that makes you feel better. In the meantime, as my energy drains away, my house gets messier, dishes go unwashed, dog goes unwalked and the fatigue is impenetrable by naps, sleeping in and lying on the couch all day.

Just wondering if any of you out there have your own experiences to share?

Heading off to have labs drawn to check H&H and cross & type in anticipation of another transfusion, hopefully sooner than later.

Keeping the Faith~

Jessica

[Jackie07]

Jessica,

Below is the abstract of an article about the practice in Germany:

Onkologie. 2013;36(5):266-272. Epub 2013 Apr 15.

Treatment of Cancer-Associated Anaemia: Results from a Two-Day Cross-Sectional Survey in Germany.
Link H, Schmitz S.
Source
Klinik für Innere Medizin 1, Westpfalz-Klinikum, Kaiserslautern, Germany.

Abstract
Background: The aim was to re-evaluate the current prevalence and management of cancer-associated anaemia as defined by the World Health Organisation (WHO) and related risk factors. Patients and Methods: This was a prospective, 2-day web-based cross-sectional survey in cancer patients with non-myeloid malignancies in German outpatient clinics. Results: 89 centres collected data from 3,867 patients, of whom 74% received active cancer therapy. The median age was 65 years (range 19-99 years) and almost two-thirds were women; 68% of the patients had solid tumours (breast 34%, colorectal 17%, lung 8%), with 56% of them being metastatic; 73% had a WHO performance score of ≤ 1. The mean haemoglobin level was 12.0 ± 1.7 g/dl (± standard deviation; range 4.3-17.8 g/dl); the prevalence of levels below 12.0 g/dl was 49%. Two-thirds of these patients were not treated for anaemia; one-third received erythropoiesis-stimulating agents (12.6%), iron therapy (8.1%), transfusions (7.5%) or combinations thereof (8.0%) during the 4 weeks before evaluation. Chemotherapy, female sex, age and poor performance status were identified as significant anaemia-associated factors. Conclusions: The prevalence of untreated anaemia and the decreased performance status of cancer patients in Germany have hardly changed since the European Cancer Anaemia Survey (ECAS) in 2001. The treatment practice may not only be driven by guidelines and does not yet reflect new concepts of anaemia management.

['lizbeth]

Jessica,

I guess I don't understand why the cancer center feels the risks are greater with Aranesp than with blood infusions.

Have you tried taking liquid chlorophyll and having a lot of dark green leafy vegetables in your diet? It might make a small difference that would add some more QOL. If you add these it would be best to add something that would also thin the blood. I guess the cancer center wouldn't be as enthusiastic about the addition of more red wine . . .

I have heard exercise helps with blood counts. I know it sounds crazy because you are so tired. Maybe a little walk would help?

I've seen this with anemia before and am so sorry about the terrible fatigue.

May every sleep be restful, and may you find a solution to this anemia soon.

[NanaJoni]

Jessica - I had the problems with anemia during chemo and ended up getting transfusions of two units of packed red cells 6 different times. After I stopped chemo, the anemia stayed and was diagnosed as pernicious anemia - now I take Vit. B-12 shots monthly and it stays pretty much okay. Have your docs checked for that as well? (Can't believe they haven't but sometimes it gets missed?) My hospital has a special unit for doing the transfusions and it streamlines the check-in process and I was usually in and out in 3 hrs.

[ElaineM]

The B 12 and healthy leafy veggies are good choices. However I wonder if liquid iron from the pharmacy would also help. Try doing an internet search on foods for a healthy bone marrow and see what you come up with. You might also want to visit a naturopathic physician or practioner of Chinese medicine if they are available in your area. They might be able to offer other suggestions.
This link might be useful.
http://www.livestrong.com/article/48...n-bone-marrow/

Does your insurance pay for part time caregivers or home health care? They might be able to provide someone to help you with the housework and cooking.
Hang in there. We are cheering for you.

[dchips1]

Venofer IV, is something I see being given to those with chronic anemia?



Good luck and prayers of healing and good energy coming your way


Darita

['lizbeth]

Jessica

Are you being monitored for ferritin counts with the increased blood transfusions? I don't know about the addition of iron, transfusions can lead to iron overload. I love the suggestion of B12.

Venofer IV is iron sucrose. it would help if you are iron deficient which may or may not be the case with your anemia.

I think at this point you deserve some pampering. Where is Cleaning for a Reason? Can you get help with meals and such? maybe a neighbor or friend to walk the dog?

I also liked the suggestion of acupuncture and the naturopath.

[yanyan]

I had to be on iron supplement due to extremly low hemoglobin. that solved the problem. Phil posted taking shark liver oil helps to boost white cells, that may help too.