Needing more blood transfusions

Hi-

My father has been on 15 mg's Revlamid/20 Dex for the past year after several months of Velcade. For the last 9-10 months he has done really well on the Revlamid, but had to stop it briefly  in July due to a heart blockage and needed a stint, once stabilized, he started back on his regular Revlamid/Dex dosage.

Since he has started back he has been having trouble with his hemoglobin levels becoming really low and needing blood transfusions.  He's been needing transfusions at least once a month. He doesn't appear to have internal bleeding, from what the can tell and think it may be caused by his chemo. Is this common? Has anyone run into this? How long can he go on having transfusions, is that a sustainable option?

Sorry for all the questions, but honestly I usually get better help here then anywhere else. This site helps me stay in tune and prepared for our Dr. visits.

Thanks in advance!

Lee

On Oct 24, 2009 8:38 PM Kpupfght wrote:

Hi-

My father has been on 15 mg's Revlamid/20 Dex for the past year after several months of Velcade. For the last 9-10 months he has done really well on the Revlamid, but had to stop it briefly  in July due to a heart blockage and needed a stint, once stabilized, he started back on his regular Revlamid/Dex dosage.

Since he has started back he has been having trouble with his hemoglobin levels becoming really low and needing blood transfusions.  He's been needing transfusions at least once a month. He doesn't appear to have internal bleeding, from what the can tell and think it may be caused by his chemo. Is this common? Has anyone run into this? How long can he go on having transfusions, is that a sustainable option?

Sorry for all the questions, but honestly I usually get better help here then anywhere else. This site helps me stay in tune and prepared for our Dr. visits.

Thanks in advance!

Lee

Lee everyone is different. Blood transfusion can continue for quite a while. I do not know of the exact time someone cannot have one. I think it is open ended. My Personal opinion is, that perhaps the heart work lowered his immune system and the chemo drugs are not as effective. Some people cannot take Revlimid for more than a year, then it looses its potency. To me his bone marrow is not making enough red blood cells. Perhaps you could consider adding alternative treatment. Codliver oil (does come in cap form) 2000 mgs per day. Vit D3 at least 2000 mg per day. Vit c, epicor immune boosters, Tumeric (read Margrets blog) http://www.blogged.com/blogs/margarets-corner-life-with.html it is a wealth of information. Healthy diet, Limited sugar . If you can get some organic, no sugar added red grape juice, really helps. Meditation, forgiveness, and try to reduce the stress on you both. You know this would be good for you to take some of the above as it would help you cope better. Vit B 100 (all the b vitamins) Take everything in capsule of powder form it digests better and add a digestive enzyme each meal. Coats Aloe is great and liquid minerals. Take care MMS

Lee,

I have been on Revlimid for four months now. 25mg daily for three weeks then a weeks break. Ever since I started my bloods have been all over the place. Haemoglobin down to 8 and Platelets regulary down too. I have had four transfusions since starting. I did have a break for 65 weeks and things appeared to stabilize so my  consultant is considering a longer break in between agian to see if this helps. However, I do feel better than I ever did since my relapse in Oct 2008.

Pat

Thanks Pat! I appreciate your response.

Did your protein levels go up over your break? My father had a month off due a heart blockage and his proteins went up quickly. They have been discussing reducing his medication, but maybe a longer break may also be an option.

I am glad to hear you are feeling better. I know this can really be a whirlwind sometimes.

Thanks again!

Lee

Thanks MM! Your feedback is greatly appreciated.

I spoke with my father's nurse the other day and they said the same thing, he said you can get transfusions indefinitely...which is a relief!

 

Hi,

No, my protein levels stayed stable.

I was told yesterday that I am now officially neutropaenic. This disease is a roller coaster just when you are feeling good another thing comes along to slap you down.

Pat

 

Hi Pat-

I am sorry to hear that. Yes, I agree...this can definitely be a roller coaster. My father's levels have always been a little low, in order to fight infection his doctor put him on Bactrim 3 days a week and it has really seemed to help with any sort of infections.

Take Care,

LeeAnne

Good Morning Pat;

This disease is a roller coaster, just when you are feeling good another thing comes along to slap you down.

You've got that right! That's why it's imperative you NEVER let your guard down with this disease.

It's a living, growing organism, and it doesn't want to die any more than us.

Stay strong, positive, and focused! We will prevail!

Take care;

Kevin