tx dependent

[bety]

Do you get red packed tx? filtered? irradiated? How often? At what hgb level? What do your hematologists recommend? My husband has become tx dependent. I want him to get the proper tx, if possible. Concerned. Thank you for your input. bety
…………
Husband, rars dx June ’03, hgb 6.4, wbc 1.0, plts. 90. Aranesp no longer working.

[patti]

Bety,

Has your hub’s doc tried Procrit to see if it will work? Sometimes when one doesn’t or stops working the other will work.

Mom has been tx dpdt for over two years. She gets filtered (which is standard in US), irradiated red cells and platelets. We had to fight hard to get irradiated cells. It’s worth the fight. Including switching docs if necessary. In Oregon platelets are single donor by law but I found out that in most states they are not so if he ever needs platelets (looks like he’s fine for now) make sure they are single donor. Make sure he takes good care of his veins and picks and chooses wisely where he has them transfuse and take CBC’s so he can preserve them without needing a picc or port later on. Marla is a good one for explaining how to do this so hopefully she’ll pipe in. Mom went two years before having to get a picc but we wished she didn’t need one at all. Infection risk is too great.

Hope this helps.

patti

[bety]

Patti,
Thank you for your response. I will discuss all with our H. Unfortunately he is away. We won’t be able to see him for a couple of weeks. Your suggestions are very helpful, as always.
bety

[Carl]

Bety,

You definately need FILTERED AND IRRADIATED packed blood cells (PRBC). The level of your hemogolobin will vary with the individual, but somewhere around 8.0 seems to be the minimum for most people. When I first go the disease, I was worn out and my heart beat like a hummingbirds’ wings at below 9.0, but I guess my body has adapted somewhat now and I can go below 7.5 without much difficulty if needed. My hemo will give me a transfusion at any time I have a HGB of 8.3 or less and how often depends on the individual. I have gone as long as a month recently, but due to the Dacogen treatments, I am getting PRBC every 1.5 weeks now.

Have you considered other treatment? Thalidomide, Revlimid, Vidaza, Dacogen and Arsenic TriOxide are some that people have tried and are available. Discuss with your hemo.

[TEMBO]

Hi Carl;

Came across your September posting. Thought I would check to see if the decitibine that you started 8/28/06 has been a benefit? Hope you are doing well. This is a option that has been suggested for my husband, if after another PRBC tx his hgb does not hold with aranesp injections.

Many Thanks,
Karen

[bety]

Carl,
Our H has assured us that the next 2 units tx (PRBC) will be filtered and irradiated. Two weeks ago (also 2weeks after the last tx), Ed’s hgb was 8.1, which is good for him. But his wbc was only 1.1 and gr was only 0.4. We had to delay our apptmt. with our H because Ed came down with a serious very painful case of cellulits on his lower rgt. leg. The low counts were probably a contributing factor. At one point his oral temp. reached 99.7 but is now around 97.3. The staph or strep probably entered from a bang on his leg or from cracks between toes from chronic but treated athelete’s foot.
For the past week or so, he has been treated with powerful oral and IM antibiotics. The cellulitis seems under control, the pain has been subsiding and he is now able to walk with less pain. Unfortunately, the antibiotics have probably caused his counts to decline further. Hopefully, he will be well enough to see his H this coming week. I appreciate any comments.
bety
…………..
Husband, 86, dx 7/03 MDS RAR, pancytopenia. Aranesp stopped working. Will get his 3rd tx soon.

[Carl]

TEMBO,

My platelets have really rebounded to my pre-Revlimid levels (Feb 2006) and I am real happy about that. My WBC and RBC are still low and I am getting Neulasta and Aranesp to help raise those counts. I have been through 2 rounds of Dacogen-Decitibine and thankfully little side effects due to the treatments (5 days IV in Oncology Clinic).

I am getting another TX tomorrow of 2 units of PRBC since my HBG is below 8.0 but it has been two weeks since my last TX.

I suggest a proactive approach to this disease and good luck to your husband.

[Carl]

bety,

Great that your husband is getting filtered and irradiated blood now. I have had cellulitus before in my arm and I know how painful it is. Hope it is about healed for your husband now. As you know it is real important to keep a close watch on any open sores or red places on your body that develop for infections and such.

I have been on preventative anitbiotics several times when my WBC count got real low. I don’t think they made my counts go down.

[franm]

Hi Bety:

My husband has been going through Vidaza now for 5 sessions and he will have another BMB on the 19th of this month. Hopefully, the oncologist will know if Vidaza is working for his AML. In the meantime, he had a Port put in…just in case he will need Tx in the future.

Wish us luck and Pray for us, please

Hope that helps answer some of your questions.

Fran

[bety]

Carl,
I am encouraged that your counts did not decline after preventative antibiotics. Ed’s cellulitis is improving daily but pain is still wearing him down. Motrin once per day helps somewhat, but it also contributes to his sleeping much of the day. Normally, even with low counts, he is surprisingly energetic. He wants to wait another few days for his tx; he feels he is not up to the hour long travel time to our H. I think a tx plus possibly some neupogen or neulasta might help him heal faster. Thank you for your comments.
bety

[bety]

Fran,
I just noticed your post. I am praying that the Vidaza reverses your husband’s AML! The port seems like a good idea. It will help save his veins and prevent more needle “sticking.” We all hope to hear good news about the new BMB results. All the best.
bety

[Dottieb]

Carl, Glad to hear you are doing well on the dacogen. Cycle 4 for John tomorrow. Will get a cbc before so I have my fingers crossed that counts will be decent. Dottie

[Jerry]

Bety …

Just a question … you mentioned Motrin … because of my platelet issues, they have told me to only use Tylenol … no Advil, Motrin, Aleve, Excedrin, etc .. it might be worth a question to your doc …

Jerry

[bety]

Jerry,
I appreciate your cautioning me about motrin and platelet problems. Ed only got it once a day for 2 days. Surprisingly his platelet count went up on Wed. from 100 a couple of weeks before to 108. Probably not statistically significant.
Also, I generally avoid giving or taking tylenol because it can cause liver damage. I always suggest checking the side effects of all medications, vitamins, herbs, etc. but sometimes I don’t take my own advice.
Thank you for reminding me!
bety

[Jim]

Carl,
If you don’t mind, what are the before and after Platelet counts with the Dacogen?

JW

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