Advice on low hgb + transfusions + Procrit

[choijk]

Hi everyone,

We came back from the hospital today and my dad was transfused with 2 pints today. His hgb was at a 6.9 which was such a low blow, considering he was at a 9.4 about 2 weeks ago. We were hoping that he would hold and maintain for awhile. He dropped 2.5 within 2 weeks. Is this normal?

However, when comparing it to his hgb from a month ago, his hgb dropped from a 8.2 to a 6.6 within a 2 week interval which makes it a 1.6 drop. Is this a factor in perhaps suggesting that his condition is worsening?

Today my dad told me in the car that getting a transfusion every month is a really big problem and he looked really frusturated. I think hes finally grappling with the graveness of this disease. This whole time, he kept telling everyone that he’s okay and that his only problem is that he doesn’t have any blood. But today, his face sang another tune.

Perhaps I missed something during my research…. is there anything I may bring up to my doctor during our follow up in 2 weeks about my dad’s low hgb/rbc and monthly transfusions? Any standard treatment besides Procrit? I was going to bring up Aransep soon and I have also brought up GS-CSF and in my doctor’s experience, he has not seen any success in adding GS-CSF to Procrit. If Procrit doesn’t work, what is the next step??? I can’t imagine having my dad on transfusions for the rest of his life. His iron was at a 286 back in January 2007 and so far he’s already been transfused 7 units. The numbers are only going to climb up at this rate. How often does everyone here receive transfusions and by how many units, if you dont mind me asking?

In the meanwhile, besides juicing and good nutrition, what else can I do? I feel helpless AND hopeless. Is there anything else I can do for my dad?? I am so desperate right now.

One more question regarding transfusion: Should Tyelonel and Benedryl be taking prior to a transfusion. The nurse didn’t give it to my dad but I recall reading about it and on other occassions, my dad took them. And does anyone know where the most comfortable area of the arm is possible to receive transfusions?

Thank you all in advance. God bless every one of you in your journey.

[eve]

june

has your dad considered trying vidaza- for some people it is quite effective in keeping the time between txs further apart

good luck

eve

[choijk]

Hi Eve,

I did consider Vidaza. My dad’s first hematologist actually first suggested it and we were scheduled for Vidaza until I made my dad a second and third opinion w/ other doctors regarding their thoughts on Vidaza. The other doctors found that Vidaza was “reasonable” but that was about it. The reason I did not have my dad proceed with Vidaza is because my dad’s white blood cells and platelets are still holding up – they are still in the normal range. I rather take a more conservative approach for my dad. I’ve read a lot of articles that although Vidaza has a great response, its only a remission and at most, the MDS progresses to an AML. I guess either way, even with a conservative treatment standpoint, there is always the possibility of transforming into AML but my dad is a low risk MDS at this time.

Thanks Eve for the suggestion. All suggestions are welcome!

[patti]

June,

All good questions. My MIL was tx dependent for 2.5yrs. At best she could go 3 weeks between tx and that was if the blood was very fresh (have no control over this) and came from what we used to call, “manly football players.” Otherwise, two weeks was it. With your dad’s hgb being in the 6’s you might find that two pints won’t last him long. When mom got in the 6’s she usually ended up getting 3 pints. With your dad being male (their counts need to be higher) he might have needed that 3rd pint.

Tylenol and benadryl are standard pre-meds but I would encourage him to avoid them unless he is seeing himself having reactions to the blood tx. Usually a reaction will be hives or chills. If that happens, then premeds are important as a reaction can actually hemolyze the blood and shorten the time between tx. Other then procrit and aranesp there are no other red cell EPO stimulators that I know of. I would not recommend trying to throw in GCSF to see if it will make the procrit work or work better.

As far as where to get transfusions, that’s up to your dad but it’s important that he rotate his veins so avoid scarring. If he uses a different vein each time and in opposite arms he should be able to transfuse for a long time. Mom ended up getting a picc because we didn’t quite rotate her veins correctly and she scarred too badly. Have him gently masssage the vein he used for a tranfusion that time for a couple days after getting blood to help keep scar tissue for forming too thickly.

On the nutrition side there are a few things you can try. First, have your dad eat lots of good, organic red meat. Any iron he gets from food is organic and is not held by the body. It’s different from the inorganic iron he gets from blood. Beets are another excellent blood food. I posted a beet juicing recipe that my MIL used to do daily. It would be good for him. I would make sure you are juicing 2-3 times a day at least. He will get his biggest help from that. Once a day will be enough to help his overall health but probably not enough to increase his reds. I have a friend who was juicing 13 times a day at one point to heal her disease (which she did heal BTW). That’s a lot. So I would go with a juice at each meal. It’s a lot of work, but worthwhile in the long run.

Hope this helps.

Patti

[Dick]

June

Hang in there.

I’ve had 81 transfusion since first diagnosed in December of 2003 . . . now it’a about every 3 weeks. Only problem with this frequency is the iron build up which we’re working on with exjade.
A TX takes about 5 to 6 hours so I take a good book and enjoy talking to the other patients in the room. Occasionally I meet a patient with MDS and we have a chance to compare notes. My count never gets very far above 10 and I usually have a TX before it gets down to 7. Seems that once the count starts to go down, it does so rather rapidly. Also takes about 24 hours for the new blood to “kick in”.

Although it would be nice to get rid of this problem, I can live with it so long as it’s a red cell problem . . . big problems would start when it becomes a whice cell issus.

Dick

[choijk]

Patti and Dick, thank you for your posts and sharing your advice and thoughts. It has been extremely hard and today was one of those REALLY hard days. My family and I been having many good days but today… I just fell into a million pieces as the day I found out about my dad’s condition.

Dick, 81 transfusions! You give me hope and to the rest of the members who are embarking on this new journey. How is Exjade working? Any side effects? That is awesome that you get to speak with other MDS patients. Today when my dad was getting transfused, there were only 4 other patients near us and they were in and out. I assume they only received only 1 packet and I don’t know their reason for the transfusion. I wish I can talk to someone at Kaiser who has MDS that I can compare notes too. But this forum has been more than I can ask for – thank you all from the bottom of my heart.

Patti, thank you for continuing to give advice and always being more than helpful especially in your time of mourning. It means a lot. Although I’m recent ot the forum, I have been keeping up with your posts and you are one truly remarkable woman. “Mom” is in heaven smiling down.

[patti]

June,

Like Dick, mom had a ton of transfusions. At last count I think it was 74. That’s just blood. She had 30+ platelet tranfusions since Aug. 06.

The Exjade actually works very well. The only caution I would have (which really doesn’t apply to you at the moment) is that if someone has low white cells it can cause them to fall a little further. We had to take mom off of the Exjade because she already had too few white cells and it made hers drop into the 400 neutrophil range when she was on it. Otherwise, I think it’s worth using. I would hold out taking it though until the iron level at at least 1500 or 2000 and I would make sure that he goes off of it when his ferritin gets down to 500. At the lower numbers hearing loss can happen if you’re not really careful. Also, read other posts regarding dosing. Do NOT let the doctors start him on 1200mg or more. Start at 250mg. and work your way up to 500 or 750. That should be enough to lower his ferritin without shocking his body by side effects.

Patti

[choijk]

How is the serum ferritin measured? I just read somewhere that it is through a bone marrow biopsy. Is this true? Or can it be tested by a blood test? Thanks for the help.

[patti]

June,

The ferritin level is tested via blood test. Mom used to get hers checked monthly or every other month once she go to about 2000. They would just draw it at the same time they drew her CBC.

Patti

[bety]

My husband may require Exjade soon. Are there any health plans that provide Exjade at a cost that is not exorbitant?

[Jimbob]

June,
I had several books on nutrition, recepies, food and food prep for leukemia and cancer patients. Unfortunately, I gave them to others who needed them. You can most likely get books like that from the social service people at the hospitals that your dad haas been at. There are ways to make it easier and tastier to eat nutritious food without chewing.
Jim

[jaxem]

june
tylenol & benedryl are standard treatments during tx’s. vidaza is good but don’t forget to consider dacogen which was approved last year.

[jga_socal]

June,
Doing the math…
Your Dad, as a small to medium sized man will carry around 16 pints of blood. The red blood cells in blood last around 110 days, around 16 weeks. With normal marrow he will lose and produce 1 pint per week. A person whose marrow has totally shut down RBC production would therefore need a 2 pint transfusion every 2 weeks. Add the fact that his RBCs are coming from numerous sources that are at various stages of expiration and that prolly accounts for the variation you are seeing. I always jot down the expiration date on the pints I get. By your statement it looks to me like your Dad is running a 100% RBC deficit. NCCN literature says that epo (procrit/aranesp) can take 6-8 weeks to work (1). If no response occurs with Epo alone, the addition of G-CSF/GM-CSF should be considered (2).

The 2 references are to the guidelines from the National Comprehensive Care Network . The guide is: ” NCCN Clinical Practice Guidelines in Oncology for Myelodysplastic Syndromes “.
This is kind of a nice document because it represents a consensus of doctors on how to treat MDS. My out-of-town doctor is listed as a panel member on page 2. She appears to be following the guidelines.
You have to read the qualification about whether to try G-CSF or GM-CSF (growth factors) to improve chances of response to Epo. Ask you Dads doctor whether he/she subscribes to the NCCN guidelines or if he/she is a member of NCCN.
(1)Pg MS-10, (2)Pg MS-10
Jim

[Jack_dup1]

June,
There is an article in Cure Magazine regarding alternative treatments, which is worth reading.
Jack

[Author]

Posts