HGB: How Low Can I Go?

[sherryjac2]

I am currently receiving Vidaza shots. My hemoglobin has dropped to 7.9 as of today. How low is too low...at what point should I expect a RBC transfusion? I feel fine, but I have one more shot to go in this cycle and I expect my counts will go down further. My doc monitors my levels weekly. I was 7.9 last Friday.
I go for my final shot tomorrow and am planning to share this concern with the doc.

[DanL]

Sherry,

Looking around at various posts, it seems like most MDS patients get transfused at around 8.0 hgb. There are a few that transfuse at 9.0. Like most health and treatment issues with MDS, this varies according to the doctor and patient. Have you spoken to your doctor? Are you experiencing a higher than normal level of fatigue?

[Marlene]

John's threshold was 8. But if you are not having problems, you may be able to go lower. Low HGB is a strain on the heart especially if you are active. You need to watch for fatigue, headaches, rapid heart beat, the sound of pounding in your head, short of breath, and dizziness.

They should be able to do a cbc before your next shot and set up a transfusion if needed. Red Cells transfusions can take one to two days for them to set it up.

[sherryjac2]

Thank you both for your prompt replies. I will definitely ask about this at tomorrow's appointment! I am only scheduled to get the shot from the nurses in the chemo area, but I'm sure they can relay my concern to the doc.

[Chirley]

MyRx centre transfused at less than 100 but only for people being transfused frequently and are not likely to have any recovery of counts without donor blood.

Regards

[triumphe64]

Originally Posted by cme01

MyRx centre transfused at less than 100 but only for people being transfused frequently and are not likely to have any recovery of counts without donor blood.

Regards

That sounds like good logic. You can keep some of your quality of life.

[bettyliz]

Hi Sherry, my husband was transfusion dependant so wanted to keep his transfusions to a minimum. He continued to work with levels down to about 6.5 as a police officer. He functioned ok at those levels,but they figure his body had adjusted to the low levels over the years. We just got out of the hospital and at the hospital they transfused whenever he dropped below 8.0. I think it can be tough on your heart with really low levels, and since you have not had transfusions and assuming you do not have iron overload issues, I'm sure your doc will transfuse you if you drop more. Godspeed.

[SLB]

Hi Sherry,
I have just started my first round of vidaza (on day 2) and yesterday doc said my hg was at 9. he said he was reluctant to transfuse me at this stage unless i was really symptomatic. I am tired (i have a 4 and 7 year old to run around after) but functioning. i find it interestig that different docs have different practices.. good luck..

Sharnie.

[sherryjac2]

I went for my 7th shot today and mentioned to the nurse that I was concerned about the upcoming week since my hemoglobin was 7.9 last Friday. She drew another CBC today and it was 7.7. She checked with the doc and he sent me for 1 unit of RBC. All went well. I have been very asymptomatic at 8, so maybe they were just delaying until I felt worse? I am very active, and this weekend when I was playing tennis I knew I was losing power. I do feel the need to keep track of things myself and monitor my treatment. The Vidaza company has a program you can download for your computer that allows you to plot your blood values on a graph, keep track of appointments and treatments on a calendar and record in a journal. Thanks for all the replies to my post.

[glitterandlace]

Originally Posted by sherryjac2

I am currently receiving Vidaza shots. My hemoglobin has dropped to 7.9 as of today. How low is too low...at what point should I expect a RBC transfusion? I feel fine, but I have one more shot to go in this cycle and I expect my counts will go down further. My doc monitors my levels weekly. I was 7.9 last Friday.
I go for my final shot tomorrow and am planning to share this concern with the doc.

I wait until mine gets down to 7.5 to help prevent iron overload.... But as soon as mine hits 8.5 I rest a lot so i will not strain my heart much. If you can not rest because of your life style i would suggest 8.0 or 8.5.

[Lbrown]

I try to keep my levels higher these days, because I work. I need transfusions every 2 weeks, usually 2 units. I have even gone in when my HGb was 100 (I didn't know what my count was beforehand). But after a couple years of this, I got tired of barely dragging myself around. One of the nurses told me it was a quality of life issue and to ask for more blood and not be stoic about it. So now, I'm not.

Deb

[Greg H]

Hi All!

I'm with Deb on this one. It's a quality of life issue. If you have a lot of transfusions, you're going to have to think about iron overload and what to do about that anyway -- so it's not worth feeling miserable just to cut a couple of units out of every twelve months.

When I was diagnosed, my Hgb was 6.2. I was functional at that level, though short of breath climbing stairs. I know I had a nine-month slide from 9.0 to that 6.2 level, and I imagine it was 12 -18 months from normal down to 6.2. So my body had a good long time to adjust.

Now, transfusions every other week bounce me from 10 down to 8 in just 14 days, and, frankly, I feel like crap below 8.0. I think that has to do with the roller coaster nature of the up and down, up and down.

I think it's important to hear what your body is telling you. Every body is different, and bodies change over time.

Take care!

Greg