Blood transfusions

[Kati Simmons]

My husband was diagnosed with MDS in August of 2020. It was diagnosed a low stage, but over about one year, his blood counts kept dropping and now he is considered high stage. He has frequent blood transfusions (two units about every 4-5 weeks). He was examined Friday and his doctor ordered two units of packed RBC, but the hospital only approved him for one unit because his HG was 7.1. We were told that unless it was 6.0 or under, he would not be given more blood. The problem is that about the 7.0 range he starts to have heart symptoms. He is weak, dizzy, and short of breath.

I am trying to figure out our options. Is anyone else having trouble getting blood? Does anyone use directed blood donations to supply the blood their loved one needs? Any thoughts would be appreciated.

[Karen LaSota]

That is pretty much a standard in many cancer treatment centers due to several issues. Once below “7” then you are approved for 2 units. Above “7” but under 8 – then 1 unit. We were told that one unit of blood typically improves levels by one point. Can you get tested more often, and get one unit more often if needed?

Did you get a new biopsy done to determine the high risk category? Several factors seem to go into the grading system especially the bone marrow cell analysis.

I hope that they are not causing you undue stress and worry. You already have enough of that with MDS. What about treatments? Have you been given any suggestions for treatment?

[Amy Clark]

I am sorry about your husband, Kati. The low blood level needed for a transfusion is a big problem. The level that a single transfusion would bring my husband (age 55) up to, is little better than the 7 hgb in terms of symptoms. In looking ahead at possible options now that the current medication he has been on for three years (Inqovi, the oral form of Dacogen) is losing effectiveness rapidly, the transfusion problem is playing into our decision. We would be looking at another clinical trial drug which will almost certainly drop blood counts to the level of almost non-function and which may not work to start with. Does he want to spend his final months worse off than he currently is for a possible few months of better health later. The doctor keeps saying he is an “experiment of one” at this point, so we have little info to go on. Of course it may turn out better than it seems right now, as happened with this current drug three years ago, but the line between diminishing optimism and acceptance is getting longer in his case. We will have to choose one or the other in the next few weeks.

In any case we plan to talk to our oncologist at MD Anderson tomorrow about the Directed Donation program at our local blood bank (Gulf Coast Regional Blood.) as we have adult children with my husband’s blood type who would be glad to donate “directly.” Your area may have something similar. Here is a description of ours in case that helps. Just scroll down to the middle of the webpage. https://www.giveblood.org/donate/why-donate-blood/donation-types/
Even with this potential help, the hospital may keep to their cutoff levels before donating. To think that three years ago the cutoff was 10 hgb is astounding.

I am sorry this disease is so awful. It really stinks. I will pray for you and your husband and everyone else on this forum. At least we are not alone and the work being done today may help others in the future, just as the work of several years ago has helped my husband live for the past 3.5 years since dx and perhaps, God willing, even longer.

[Paula Voell]

Hi Kati, I am fortunate that my daughter is A+ blood type which is the same as mine and she has donated twice for my transfusions which are between 5-6 weeks apart now. I had a poor experience a couple of days ago when I went for a transfusion. I am very aware that I have small and curvy veins. The nurses usually spend several minutes to find a good location for needle insertion. One of their tricks is to give me a heated blanket to plump up the vein.
When I mentioned this to the most recent nurse, she said she is the one called on for the most difficult cases and was confident she would get it on the first try without the blanket. Well it didn’t happen. She tried twice, another nurse tried twice and four veins blew out. Then they finally brought the heated blanket I had asked for at the beginning and found a vein that worked on the fifth try.
I am left with five bruises on my arms. I find it ironic that one of the MDS symptoms is easy bruising. Lesson from this experience is to be more assertive in what works for me. Paula Voell

[stacey]

Kati,
My information is a bit outdated, sorry, but here is what happened when I got directed donations in 2004. At the time, I was about 34 and newly diagnosed with 5q- MDS, and my hemoglobin had dropped to a 5.9. I remember I felt so tired I didn’t want to get off the couch. Initially I was hesitant to take blood from anonymous donors at the bank, so I had people I knew donate. I received 3 units at the time. Here’s what I remember:
1 – First, I called my local Red Cross to ask questions and get info on how directed donations worked. They took down all my personal information. I don’t think that I needed to give them my donors’ names at that time.
2- Next, my potential donors went in to their local Red Cross to donate and told them the blood was specifically for me. None of them lived in my city. Several were across state and one was out of state, and the whole process still worked smoothly.
3- The donors were asked a list of questions before donation, and at that time, 2 of my donors were rejected. My mom was rejected, because she had recently had an eye problem, and a friend of my mom’s daughter was rejected due to anemia. In addition, the doctor said beforehand that my husband should not donate to me since we didn’t have kids yet. So I ended up needing more people lined up than expected.
4 – The blood was all tested, collected, shipped, and I showed up at my local oncologist’s office and got the blood with no issues whatsoever.
5 – Later, my donors mentioned they got quite a few calls at home afterward from the Red Cross asking for more blood donations, but they let them know they were saving the blood for me in case I needed future donations.

My blood type is A+, and I received two units of A+ and 1 unit of A-. Note that I could take from a negative RH factor because I was positive, however, a negative RH factor can’t take blood from a positive RH factor because of the antibodies.
By the way, after I got those 3 units, I was so impressed by the screening and testing done by the Red Cross that I had no worries about getting any future units without directed donation. But in a time like this with the blood shortages, I can see why you’re thinking about directed donations. Best wishes to you both.

-Stacey

[Kati Simmons]

Karen: Things changed for us very quickly. My husband has been on Azacitidine injections for about three months. He was admitted to the hospital 10 days ago for an infection caused by low blood counts and we were told that he would be in the hospital for two weeks. After 6 days, he was released to home without notice and we were supposed to make an immediate decision about hospice. The doctor at the hospital was frustrated with us for not following his advice and engaging hospice. We needed to give this important decision some thought and talk to our children, etc. The result of this unexpected release was that we came home without any support or medications to help with pain or shortness of breath. We were provided oxygen. I have been caring for him at home, but when I found myself unable to help him with shortness of breath or other pain and issues we finally did reach out to hospice and “fell into line.” Hospice claims they will help arrange blood transfusions, but I have some doubt about that.

[Mary Roth]

I had my first transfusion in Feb. when hemoglobin was 8.1 (81 here in Canada, where I live). I was surprised that it didn’t improve my tiredness. I started on Revlimid 5mg after that, and my hemoglobin is still in the 7.7-8.9 range, so can’t get another transfusion. The internal medicine doctor hinted that hemoglobin isn’t necessarily what keeps me tired; “it is the disease.” (I was wishing I could get enough blood to get my hemoglobin up to normal. Now, I hope the Revlimid will help.}

[Jack Allen]

Hi Mary,
I was diagnosed with MDS RARS 20 years ago and have tried every drug offered for my version of MDS.
Revlimid worked the best (for about 2 years).
Early in the process my thyroid died completely so make sure you get your TSH tested regularly.
My other main side effect was a big drop in WBCs, especially neutrophils (down below.5) so I had to take neupogen, but switched to the once/month shot of NeuLasta which solved the problem.
Others seemed concerned about transfusion levels.
I get 1 or 2 bags every week. Getting to the point where I don’t make many useful RBCs of my own.
Unfortunately, im my opinion, we are slowly being killed by low transfusion levels.
When I lived in Calgary we discovered that I had heart arythmia when my count went under 100 (10.0 for you U.S. people), so my doctor ordered my blood to keep me over 100 and I had no problems.
My wife said we had to move back to family in 2006 so we went to Ontario where you could not get a transfusion at 85 or over.
Stupid , stupid , stupid. They saved 2 bags of blood and what happened; I went into heart failure. So it cost the health care system annual cardiologist vists, echo cardiograms, etc. I went for 3 cardiac ablation surguries which did not work. I also needed 2 stents put in and apparantly have severe calcification of my Aorta and coronary arteries.
The various health care segments seem to only look at their own costs not the overall costs and patient effect.

[Mary Roth]

Thanks, Jack, for writing all of that. It was very interesting to me to learn that other places allow transfusions at higher hemoglobin levels.

I have taken Revlimid for 11 weeks now with no helpful benefit noticed. My doctor said to take it two more months and then if it hasn’t helped increase to 10 mg. I’m just hoping it helps by then. I wonder if it took a long time to help anyone else, and sort of curious why he chose to started at 5 mg when the literature says start at 10 mg

[Jack Allen]

Mary,
I have no idea why he started you at 5mg. I started at 10mg in May 2008 and it stopped working early Feb 2010, so 20 months later. Worked very well. I wish I knew why it stopped working. At the top end I hit 12.0.

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