[Mary4Mike]

Jack,

I have been keeping up with what is going on with your wife…I am sorry to hear about her latest blast count. Is that the reason valproic acid is being added to Dacogen…to bring the blast count down or does it just boost the effectiveness of the Dacogen? Also, is this a FDA approved treatment or is it still in the clinical stage? The reason I am asking is that our doctor won’t do any treatment that isn’t approved. I don’t know if it has to do with insurance or what. How long of a stay will your wife have in the hospital? Hopefully, not long.

Sending you and your wife good thoughts and prayers,

[Mary4Mike]

June,

I have to also wonder why they haven’t suggested a port. My husband had one put in a couple of months ago because he was experiencing the same problem with multiple attempts in hitting a vein. The nurses said he has “rolling veins”. The port procedure was done with local anesthetic and he said it was a snap. He even drove home alone right after – a half hour away. It has reduced a lot of the stress of blood draws, typing draws, and transfusions. We were told that a nurse can only attempt 3 (or was it 2) pricks and then they have to get another nurse. I also know that the warm towel on the arm has helped my mom in the past. We always ask for it BEFORE any attempts are made.

By the way, June, how is your dad responding to Revlimid? Have you seen any change in his counts at all? Has his doctor said how many rounds they will do to give it a fair test? I hope and pray that it works for your dad as it has for many others.

Mike is going to begin Dacogen next week for the second time, please say a prayer.

All the best,

[Mary4Mike]

Neil,

Our prayers and best wishes go out to you.

I am curious as to how the squamous cell carcinoma was detected – a regular dermatology check up or by you? Proof positive that we also have to monitor other aspects of our health.

Please keep in touch with us, BUT also stay rested. I hope your man, Adrian Peterson does well, EXCEPT when he is playing the Lions !

[Mary4Mike]

Hattie,

My husband has been on Exjade for 20 months now. The first 12 months he was off tx, however he has since resumed them. He had a starting Fe of 2500. He had it checked not long ago and it is now 590. Yes, it works and in Mike’s experience, with little side effects (that we know of). He has his kidney and liver function monitored and so far there has been no effect.

I wish the best for your husband, Jim, and you.

[Mary4Mike]

Ira N.

All of us on this forum have been following your success story. We are ready for the latest news on your medical journey. We pray that all is well with you.

Hope to hear from you.

[Mary4Mike]

Linda,

When my husband first tried Dacogen, he also had the terrible mouth sores and a nosebleed. The doctor prescribed Ann Arbor mouthwash. It is made up of nystatin, benadryl, tetracycline, and kaopectate. The instructions said “swish and swallow”. It helped alot. His second round of Dacogen was at a lowered dose and he did not experience the sores or nosebleed, however, he still had the lowered blood counts. (platelets 6) He never had the skin sores.

Hope this helps.

[Mary4Mike]

Jack,

I agree with Katie. I am sure your wife and you will make the right decision. Reading your posts makes it very clear that you are very educated in this disease and this particular procedure. Your wife is blessed to have someone who has taken it upon himself to learn about this. You are obviously blessed with a wonderful wife or you wouldn’t have made this generous effort.

My prayers will be with you both, either way, whatever you two decide.

[Mary4Mike]

Hello Linda – Bluyz1966

I was reading through past posts and wondered how your mom was doing on the Dacogen. Has she finished the first round of treatment and has she experienced any side effects yet? I am wondering because my husband will most likely begin Dacogen the first part of December.

Can you give us an update?

[Mary4Mike]

Jack,

You and your wife have to be sitting on pins and needles waiting to hear from Minnesota. You have got to keep us up on all of this. I am happy to hear that your wife is tolerating the Exjade so well. I am amazed at how it sounds that she handled Dacogen in the same manner. Mike took 2 rounds of Dacogen and it really hit him hard…nosebleeds, mouth sores, EXTREME fatigue, and big drops in counts. He had to have 3 txs with platelets in 3 days. He decided to stop Dacogen and give Revlimid a try since our insurance was now willing to pay for it. The day he went in for bloodwork prior to starting Revlimid, all of his counts were up. His hgb was the highest it has been in a few years – 11. We now feel that the Dacogen was kicking in. He has not maintained these counts since being on Revlimid….a slow decline across the board, plus the occasional tx. He was ready to give up on the Revlimid after the 4 month round, when his counts started rising, just a little. The doctor wanted to try one more round and see what happens. His counts are up and down and he feels like #%&*. He is going to finish this round (3 more weeks), but if there is no BIG improvement he is going off it. The doctor then wants him to be off all treatment to see where his counts levels off at…of course he won’t let him go too low without tx because it is too hard to gain back. After that, he is going to try Dacogen again and just gut out the first couple of months. This time we will be more demanding about being tx sooner. Also, our doctor has not ordered a BMT since the October of 05. We have asked several times and he just says that his bloodwork doesn’t show anything that would require one at this time. Should we be alarmed about this? Should we demand one? One thing I would like to also mention is that everyone on here seems to have such low platelet counts. Mike’s was always between 350 and 500, even while on Vidaza. They dropped significantly on Dacogen to 6. They have since gone up to 250 and are still rising. I haven’t heard of anyone else with these platelet numbers.

Sorry I rambled on so long. It is great to be able to come here and ask questions.

[Mary4Mike]

JoyceDee,

Our thoughts on Exjade are we are thankful that they came out with a daily at home treatment for iron overload and we pray that it does not have detrimental side effects down the road. We never had to go the desferral pump route, thank goodness. The first 12 months he took it he was tx free. His iron came down to 590 from a start point of 2500. He has since resumed txs and he will be getting checked again next week. He went off Exjade for about a month to see if it may be interferring with the Revlimid treatment. It didn’t seem to make a difference.

Our other thought is the expense of this drug. From the time he started to the present, there have been 2 price increases. You wonder how long one can keep up with that?

I hope this gives you a little insight.

[Mary4Mike]

Jack,

I see that your wife has been on Exjade for a month now. How is she doing? Does she have to receive tx’s? That seems like a catch 22 …Exjade/tx’s. You wonder if you can ever get ahead of it. That is something we are dealing with right now.

Did you make it to the Univ. of Minn yet? Any news? I hope all goes well with your wife.

Mary

[Mary4Mike]

Ira,

We haven’t heard an update from you in over a month. Are your counts still holding? Are you taking any type of treatment at the present? Please bring us up to date on your progress.

Thanks,

[Mary4Mike]

Hello Shellbivens,

My husband has been on Exjade for 20 months now. He has experienced no side effects that we are aware of. During this time he has also been on Vidaza for 12 months and Revlimid for 4 months. As long as his doctor watches his blood counts for liver and kidney functions he should be alright. I would also recommend drinking alot of water even though the Exjade and the accumulated iron is passed through the stool. Others on here also mentioned that their stool changed color; this was not the case with my husband. Also,some of the other members mentioned that their doctor’s had their hearing and eyes checked prior to beginning Exjade.

Hope this helps.

[Mary4Mike]

June,

Do you recall why the doctor did not recommend Vidaza for low risk patients? My husband is low risk and was given Vidaza. It kept him off txs for 12 months. He also had no side effects.

Just asking

[Mary4Mike]

Jim,

I am sorry to hear your father is “resigned” to pass away in weeks or a few short months. I don’t know how far back you went on reading past posts, but there are many people with this disease that have lived for years with it. Most of the chemical treatments tend to knock down the blood counts initially. Transfusions don’t always make one feel boosted up during the first weeks of a treatment. If you haven’t already done this, click on search and type in Revlimid and you will find several posts of different side effects that people have experienced on it. It may help your father to hear about some of the experiences others have had…most aren’t anywhere as terrible as the black box warnings and most of them go away after awhile or they can be treated such as nausea, etc.

It is easy to feel hopeless when you are nauseated, weak, and fatigued. If he is getting “treatments” this week, perhaps some of the side effects will pass. If these came on rather suddenly, I would have to say it most likely is from the Revlimid.

One last thing….most people on this forum don’t put a lot of stock in statistics.

Take care,

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