[gj]

Hi Warrent

Sorry to hear about the issues that have come up.

Can they use VIDAZA or REVLIMID? Also can they use ARANESP or PROCRIT instead of the transfusions?

Also since you are becoming transfusion dependent you might want to have a discussion about EXJADE or iron chelation. Once you near your 10th treatment iron builds in your system and does not naturally flush so you have to take something to reduce the build up.

Just a few thoughts. Hope they help. Some of them I’m sure your doc has considered but may give you ideas to continue the search.

Wishing you the strength on this journey
greg

[gj]

Hi Mario

I’m not an expert on Revlimid but I do know it is used extensively for chromosome -5q deletion.
There is a post near the top of the chain about FDA approval and some of the dicussion might help. One by sara ner the bottom of page 1 says it is used primary involving red blood cells.
Couple of sources you might want to check is AAMDS(anaplastic anemia & MDS)web site and the NCI(national cancer institute)sites.
The only other thing you can do is ask questions of the doctors, nurses and staff till you find answers that explain things for you that are in layman terms.
Wishing you and your dad the strength on this journey.
greg

[gj]

In about the last 5-6 months, I have become more blood dependent. Usually getting platelets between every 5-7 days and one round(2 units) of reds sometime between Dacogen treatments.(Begin Dacogen #11 ext week)
One thing to keep on the watch for is as your dad’s transfusion units get around the 20 range, you might want them to start checking for iron overload as that can become a significant problem.
Good luck
gj

[gj]

Thanks to everyone for the info on cranberry juice. I just don’t care for apple juice. I like orange juice but don’t want to start associating it with the lovely sandy taste of Exjade. I began using gatorade, which I talked to a nurse about. It adds some flavor to coat the taste but is not overwhelming. I’m still surprised that I haven’t found anyone to give a definitive answer as to why not the cranberry juice. When I talked to the bioscrip people, they were unsure. I know quite a few nurses and no one else seems to know.
Guess I’m just one of those who can somehow manage to put a bump in a smooth road.
Thanks again
greg

[gj]

Mbrio

I am a 2ndary MDS patient, after 18 months clear from a SCT for MCL, I came to the other side.
Tried one round of Vidaza with no luck. Then went on to Dcaogen. Going to start tx #11 next Monday, altho we did a few treatments at half dose, which helped the blood counts but didn’t keep the blasts down.
I usually drop my WBC into the 1.2 range after treatment. I end up getting blood once or twice between treatments when my RBC will drop to between 8.5 – 8.2. My platelets gives the doc the most fits. A good count for me is in the upper 30’s and doc usually gets me a pint when I hit 10 or lower, so I average 3-4 doses of platelets between treatments.
After this next tx it’s probably time for the dreaded bone marrow biopsy. I usually don’t have much side efect reaction to the Dacogen, but because I began the “uckky” process of Exjade for iron overload from too many blood products.
Hope these thoughts help.
The best
greg

[gj]

Several of the chemo drugs do have a side effect of hearing loss. It might be good for your mil to have a hearing test to set a baseline and have it monitored regularly.
I know my hearing has been progressively decreasing since treatment.
gj

[gj]

I’m new to this Exjade routine, coming up on my first month of treatment. I know they did a creatin level and had me visit the eye doc and an audiologist to establish baselines for everything.
My fe level was 1313, which seems low by comparison to some of the others. Yet 2 different docs said I”m high enough to be on the med.
Has anyone found anything to help relieve the nasty, sandy taste? Also can’t find the answer to this — Is it OK to take it in cranberry juice? I’ve asked two nurses and got conflicting opinions — one yea and one nay.
Wishing you all the best.
greg

[gj]

Admin

Might want to check the postings of

BREANGEAGEW

BOISKBORCOR

IMARIAMAHA

They seem like they may not belong

[gj]

Lynne

Frank is right, once you get into the 9 or 10 transfusion of 2 units the iron begins to rise. They can do a blood test as part of a regular CBC. If I remember the range begins at about 35-250 units of serum ferratin. I recently started on Exjade because my SF count was 1313, well above the acceptable level.
If you’re concerned ask you doctor or one of the nurses and they should be able to discuss your concerns.
Wishing you the best.
greg

[gj]

Hi Mary

I’m due for another dose of Dacogen(#8) once I get past a few other issues, mainly low pulse which they attributed to an electrical problem and recently installed a pacemaker.
I’m like the little teapot, 5’10” and 260+ so I was getting a 45/46 mg dose for the first 4 tx. My counts dropped and so for the last 3 tx I was on a half dose regimen.
My counts have dropped and continue to run on the low side. I am due for a BMB next week and from there a decision will be made as what comes next.
Wishing you both the best
greg

[gj]

Jack

Marlene really hit the nail on the head re: the WBC and ANC. I took Neupogen during my stem cell transplant but my onco refuse to use it to bring up my WBC because he feels it could stimulate the blasts rather than the WBC. My ANC moves around 0.5 and higher–maybe up into the 2.0 range at the high end. During my first few treatments with Vidaza and Dacogen I spiked fevers and unknown infections and was hospitalized, after that I have been doing everything out patient. With GI issues, I have been on Protonix ever since my transplant and have not really have had issues in that area.

[gj]

I find that article interesting and plan on showing it to my onco next week when I see him. I have been on weekly procrit for about six months with only one stop for a transfusion of RBC. Some of the issues with transfusions vs EPO are the length of time it takes for a transfusion and the potential for GVH reaction. There is the necessity to weigh the potenital good vs the bad effects. Also my onco will not give me anything for low WBC because he feels that those drugs could stimulate the MDS and he absolutely refuses to give anything but platelets to replace low platelets, even tho there is a shot that can be given.
Of course you need to bring up your concerns with the doctor. Bring him the article and see what he says and then you can make a decision from there.
Wishing you the best
greg

[gj]

Sarah

I just finished posting on LuAnn’s thread about dacogen. I spent 3 or 4 trips in the hospital with an unspecified upper respiratory infection after Vidaza and Dacogen. I don’t know about Revlimid but it can happen with other MDS chemo.
There is another patient in my oncologists practice that has ended up in the hospital like myself with similar infections.
Hope this helps to let you know this is possible.
gj

[gj]

Hi Gang!

After several rounds of treatment with both Vidaza and Dacogen, I found myself in the hospital with an unspecified upper respiratory infection. Had the high fever which was knocked down with a few days of antibiotics. The chemo can lower your blood counts to the point that something comes in and wreck havoc with your system and makes live exciting for a while.
After about my 4th round I have avoided the hospital route but the treatments still know the _ _ _ _ out of my blood counts.
Wishing you all the best
gj

[gj]

Hey everyone!

I’ve been around Dacogen for a while now and usually manage to develop side effect #13 out of 10.

Mary
That back and bone pain seems to be strongest during the low point — nadir — after treatment. I’ve noticed a lessening of bone pain as treatment moved on. Altho each of us react differently, it seems to have gotten less the further along treatment progesses. My onco said once you get 4 rounds in that is when dacogen really kicks in. He also said the first 4 rounds should be in the 4-5 week cycle and less aggressive after that. My last 2 treatments were on lower doses because my counts were lower than usual.

LuAn
I ended up in the hospital with an unspecified infection three times after treatment with Dacogen. Had a fever which responded to antibiotics. Since then I’ve managed to avoid the high fever — came close a few times but haven’t been in the hospital since.
With my lower counts I have devleoped shortness of breath and the onco is beginning to check into a reason for that, since my blood doesn’t seem to indicate aenemia.

Hope these few thoughts help.
gj

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