[Mary4Mike]

Jack,

It was never recommended to Mike to have baseline hearing & vision tests prior to starting Exjade, however he has these exams done on a timely basis dues to wearing glasses and hearing aids.

Also, our doctor told us that the Exjade and iron are excreted through the stool. He has never noticed a major color change nor has he had any side effects (that we know of). He takes 4 of the tablets every morning. He started with that dose right away, but that is not to say that starting at a lower dose is a bad idea.

The best to your wife.

[Mary4Mike]

Jim,
I am curious to know if during the time you took Exjade (April to August 27), were you also getting transfusions? That is also going to cause your levels to jump around.

Just wondering,

[Mary4Mike]

Hello Jonelle,

Did your husband have kidney failure after starting the Dacogen or before? How is he doing with that now? Many of these drugs are so hard on the kidneys that the doctor may be thinking long term cure vs. lifetime “treatment”. Also, the fact that your husband is young and would have that on his side in BMT recovery….I don’t know if there is an age limit for BMT. Our doctor has hinted that there is, but has never given us a number.

Keep writing down questions. We visited the transplant team at Karmanos Cancer Clinic in Detroit and these people know that there are a lot of questions that need to be answered.

Best wishes and keep us posted!

[Mary4Mike]

June,

After rereading your post, I wondered if Dr. Shar was upset/offended/whatever that you and your parents ultimately went with Dr. Rodriguez?….not that that should make a bit of difference…just curious.

Also, having had shingles myself, are the sores on his chest kind of crusty and oozy and extremely painful? Did he prescribe Valtrex or Acyclovir or did he prescribe a steroid? Just wondering, because shingles is more than welts.

Keep your chin up, you are being a great daughter!

[Mary4Mike]

Jack,

Thanks for the tip. I got my answer and I am slowly putting together my file for submitting a claim.

You haven’t given us an update for awhile on your wife’s progress. What treatment is she currently on. I was interested in the fact that she seemed to handle the Dacogen fairly well. Mike had a hard time with it and went off after only 2 cycles. We feel now that we were a bit premature in stopping because just prior to starting the Revlimid, his counts started to rebound to a level that was the best in a couple of years. Mike was the first patient that our doctor put on Dacogen. Most of his other patients (around 20) are doing Vidaza or Revlimid. After reading this forum (a God send), we feel he did not get the proper supportive care. It does not appear that the Revlimid is going to do the trick for Mike. He is on the third round and no improvements in counts (they ALL dropped after 1st round) and he has had two tx since being on it. He will do one more round and if nothing happens, he’ll go off. Then our doctor wants him to stay off any chemo treatment and see where his counts go. Have you ever heard of anyone else trying this? I know that Mike won’t let his counts get too low without tx because it is too hard to get back to functioning levels again. He doesn’t do well with HGB below 9. He is very interested in trying the Dacogen again, only this time with more supportive care ie. tx, Neulasta, and whatever else it takes.

I would be interested in hearing your take on all this AND let us know about how your wife is doing.

[Mary4Mike]

Lindajo,

Sorry, I don’t have any answers to you spleen questions. I am sure you will hear from someone on this as I have read a few posts on this.

I read your profile and am curious about what type of vitamins you are on. Would you care to fill us in?

Mary

[Mary4Mike]

June,

I am sorry to hear about the experience you had with that “doctor”. It sounds like you took the right measures in reporting his behavior. I would mention it to your dad’s regular doctor when he returns from vacation, however, don’t be surprised if you don’t get much of a response from him. Doctor’s in a group won’t usually say too much about each other that is negative. The way you described your “conversation” with this guy, I am sure you aren’t the first one to have a run in like this with him. Your regular doctor has probably heard this same story before. I am sorry your father had to sit there and listen to that load of ____! As far as transfusions, our doctor told my husband that he could keep him alive for a long time by transfusions alone…..plus Exjade. Mike is going to try everything that becomes available, but knowing this somehow gives us a little peace of mind. Keep up the good work with your dad, June!

Bev,

Welcome to the posting portion of this forum! One word about Procrit. Our doctor told us that if no response is seen within 6 to 8 weeks, it isn’t going to be beneficial to that patient. Thought you would be interested in another doc’s opinion.

Mary

[Mary4Mike]

Dear Bety,

I am going to guess that Dr. Raza will require a bone marrow. When Mike saw her in 2002 at Rush in Chicago, she required him to have a BMB even though he had had one less than 2 months prior. Having been present for all of Mike’s BMB, I can tell you she draws a LOT more samples than other doctors did. She uses it for research AND diagnosing, typing, etc. I am not trying to paint a scary picture at all. Mike said that the woman that Dr. Raza had doing her BMB was the best of all the others he has had. He had 3 done at Rush and was never “put under”……that’s how slick this woman was. The doctor he is seeing regularly here is a whole other story. He plans to be put under for future BMB done by him. I guess each person has their own style.

Keep us up to date if Ed gets in to see her. We are all curious about why she moved again.

Mary

[Mary4Mike]

Hello Jonelle,

I am sorry that I don’t have answers to your BMT questions. I do have to say that I would be surprised to learn that those things are true. Has your husband found a donor yet? I will pray that all will go well for him.

What caught my eye is that you are from Naples, FL. We spend November and March in Naples and love it there. My husband sees a Dr. Susan Morgan at Cancer Specialists there in Naples. Are you familiar with that clinic? She usually just administers whatever treament he is on at the time and does weekly CBC’s. We would be interested in knowing if there is someone close there that you have been satisfied with.

Take care and best wishes for your consult at Shands.

Mary

[Mary4Mike]

Hello Marlene,

I think it is wonderful that you are going to see a doctor that will look at the complete picture of John’s health. I agree that we should never stop trying to improve our quality of life. This is the exact reason we had heavy metal testing done. There are small things we can do to have a healthier lifestyle. For instance, we distill our water.

I would be glad to hear about the hormonal balancing. I am doing that myself (bioidentical hormones) with wonderful results. This is another avenue I would like Mike to try, if only to feel better.

One really has to be proactive when it comes to our health.

Keep in touch about this,

Mary

[Mary4Mike]

Marlene,

Yes, they monitor kidney function. Mike’s hemo keeps an eye on his kidney function because of the Exjade and Revlimid, also.

After every 10 chelation treatments, he would be given a bag of minerals to replace the good minerals that are chelated out.

Mike has also done oral chelation, however this is no where as effective as IV. The oral is simply herbal and vitamin based where the IV is chemical based (EDTA ).

When Mike did the mercury chelation shots, it probably wiped him out because it is a strong chemical chelator that is used….I would have to look up what it is. It exhausted him more than his usual tiredness. One interesting side note: the few times he did the IV chelation, his perspiration had a heavy metal “smell” for a couple of days afterwards.

He just informed me ( ) that he has not made up his mind about doing the chelation. The choice has to be his of course, but I hope he decides to do it. Right now we are in the middle of giving Revlimid it’s trial run. So far, it doesn’t appear to be working for him, but we have 2 more months to go. Thankfully he has had no negative side effects except constipation.

What other treatment is John on other than the Exjade? I’m sure you have already written this.
I will be interested to hear about his heavy metal testing.

Mary

[Mary4Mike]

Hello Shellbivens,

Thank you so much for your positive testimony on chelation. I have read many stories like your father’s and am convinced that it works. Isn’t it sad that the majority of the medical professionals aren’t accepting of this, not to mention other alternative treatments? If they don’t learn about this in college they won’t open their minds to it.

I am thankful for the wealth of info we can find on the internet. It allows us know what is out there – conventional or alternative. I am not saying that an herb is going to cure MDS, but there are complimentary things we can use along with the other.

Again, thank you. Mike plans to do chelation in the not so distant future….but as you can understand, it means more doctor visits, more needles, etc. (sigh)

I’ll keep you posted.

Mary

[Mary4Mike]

Hello Marlene,

We are seriously considering the chelation therapy. The doctor recommended 30 treatments. The hemotologist that diagnosed him with MDS initially felt it was essential to remove the heavy metals. He is no longer practicing onc/hemo due to burn out.

Mike has done chelation for high mercury levels, but they really wiped him out. That was done by injection, one in each hip.

Once he gets started, I will keep you informed. He isn’t looking forward to having more needles inserted, though. Yesterdays tx took 5 attempts to get the needle in…OUCH!

Please let us know what John’s doc has to say about the heavy metals and chelation.

Thanks for responding.

Mary

[Mary4Mike]

Marlene,

I just pulled out the package insert for Revlimid and thrombocytopenia and neutropenia were the most frequently reported adverse events reported. (this seems to be the case for all the MDS drugs).

Exjade hasn’t caused any adverse blood counts
during the time that he has been on it (17 months). He just started his third month on Revlimid and his counts are not rising….in fact he had his first tx yesterday since June 6/07. We are praying that the Revlimid kicks in pretty soon!!!! We aren’t blaming the Exjade for the non-reponse, but we want to be sure. He has gone off the Exjade for now to see if he gets a more positive response to the Revlimid. His ferritin is a little over 1000.
I guess our loved ones are the guinea pigs in all this, but we are thankful that they we have the drugs to try.

[Mary4Mike]

Hello Exjade and Revlimid users,

Today, I received a message from an advocate for our health insurance. She was looking for information about the Exjade/Revlimid issue. She contacted the makers of Revlimid and they said that no studies or research have been conducted. I will be in contact with her on this matter, especially if she is able to find new data. I am hoping she contacts the makers of Exjade. If I learn anything new, rest assured I will pass it along to all of you.

Best wishes,
Mary

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