[Mary4Mike]

Hello Jim Lucas

Welcome to the forum. This is a great place for support and information.

If I am understanding you correctly, your father’s doctor is Dr. Alan List. He couldn’t be in better hands, especially in regards to Revlimid. If I remember right, he did research and clinical trials with Revlimid. As far as your father’s symptoms, one thing you learn here is that everyone responds differently. I pulled the insert from the Revlimid package. I am sure you know that they have to report every side effect that was experienced. Some of them are renal impairment, blood and lymphatic system disorders, skin and subcutaneous tissue disorders, gastrointestinal disorders, diarrhea, pruitus, rash and fatigue. My husband has experienced constipation. His counts also went down and he had to be transfused. If your father has had this sudden weakness, he probably should call his doctor before next week.

I would take a list of all the symptoms your father is experiencing and go over each one with his doctor. The injections he is getting could possibly be Procrit or Aranesp to boost his red blood cells.

I hope that your father will open up to you with information, because there is a lot to be learned on the web. He may not have access to a computer or he may not feel well enough to do the research himself.

If you have his blood counts, blast counts, or bone marrow info, you could post those here. There are intelligent people on here that might have some insight for you.

Best wishes to you and your father. Keep us posted on his progress.

[Mary4Mike]

Hello Marlene,

Wow, DMPS and EDTA in one day! I am sure you are aware that these are the chelation drugs that are used for chelation, so he basically got a chelation treatment(s) today. DMPS is used for mercury removal and EDTA is used for lead removal. Of course, other mineral/metals are removed in the process. DMPS is the one that really wiped Mike out for a couple of days. Make sure he drinks plenty of water. As far as the low testosterone and HGH levels, that is “normal” for everyone as we age. Are they planning to supplement him?

Don’t be afraid to go back for the results. If he has an infection lurking somewhere, hopefully they will find out and treat it. This all has to be for the betterment of his health. I can understand going off Exjade while doing all this testing.

Mike had an appointment yesterday with his hema/doc for his monthly check up and we were pleasantly surprised to learn that all of his blood counts are rising, not alot, but not going down as they usually do. We were expecting to end the Revlimid (4 rounds) and go on from there, but now the doctor wants to try another round and see what happens. This may be an answer to our prayers.

Keep me up to date on John’s progress!

[Mary4Mike]

Anne,

Did you ever find anything to help with your hypothyroidism? If you Google “alternative treatments for hypothyroid” there is a wealth of info. Be sure to check them out with your doctor if you find something that might work. Did your doctor suggest Armour, a dessicated thyroid product that is by prescription only. It is an old time med, but some still prescribe it (my mother takes it). Some of the herbs that are suggested for this condition contain iodine so use extreme caution since you are allergic. I am sure there is something out there that could help you and there are dietary changes that can help ie. broccoli is not good for hypothyroid in large amounts.

Are you still on supportive care only for your MDS? How about your ANC levels?

Best wishes,

[Mary4Mike]

Hello Cheryl,

I am sorry to hear that you dad’s levels were down today. This disease really takes you on a roller coaster ride. I have got to think that your dad will be going on Exjade, the oral iron chelator, and yes, it is expensive. I hope his insurance will pay for it – some do. My husband took Vidaza for a year and it kept him tx free during that time. He also had a port put in just about the same time as your dad. What a difference it makes for IV procedures!

All the best to you and your folks.

[Mary4Mike]

Marlene,

Looking over these back posts, I wondered what John found out about his heavy metal levels and if he looked into hormone balancing. Is he going to do chelation therapy?

Please give us an update and I hope all is well with John and you.

[Mary4Mike]

Shellbivens,

Thanks for the email on chelation. No, Mike has not begun chelation therapy. We have not ruled it out, but it isn’t in his plans for the near future. He is just finishing up his 4 month trial of Revlimid which, disappointedly, did not work for him. Next on the agenda is to not take anything and see where he levels off at (doctor’s idea). He is planning to begin Dacogen in December. He had a port put in a couple off weeks ago which has certainly made txs easier and will be better with the Dacogen IV’s. It will also help when he does do the chelation therapy. I will let you know when he begins that.

What is your dad currently doing for treatment? Where are his counts at? Give us an update on him if you would.

Thanks again for the interest.

[Mary4Mike]

Bob,

So happy to hear about your positive response to Vidaza. My husband took Vidaza for approximately 1 year. Prior to starting it, he was tx dependent (monthly). After beginning Vidaza, he had only one tx, one week later. He never had another tx for 12 months when his counts went down again. It was a slow decline in counts. He never got a HGB response of 14 though. He was lucky to hover in the low to mid 9’s. We still felt this a success because it kept him off tx. His other counts were good. Our doctor’s opinion was to keep him on it as long as it was working. He never had side effects from it (that we know of). He is finishing up a 4 month trial of Revlimid which has not proven to be an answer for him. Next step is going off everything and seeing where he levels off (doctor’s idea) and then beginning Dacogen.

Keep up the good work and let us know what you decide.

[Mary4Mike]

Dear Susan,

My deepest sympathy goes out to you and your family for the passing of your father. Keep in mind that your father is in heaven today and let that be your comfort and strength.

Our thoughts are with you,

[Mary4Mike]

Jack,

I was glad to hear your wife is doing well on the Exjade and surprised to learn that she takes it 3 times a day. Mike takes his full daily dose (4 500mg tablets) first thing in the morning 1/2 hour prior to anything else. Yes, Exjade is VERY expensive. Our copay for it is over $2,500 per month. The price of the drug has slowly gone up during the 18 months that he has been on it.
I will say a prayer that your wife is accepted at MN and that she will have a good outcome!

[Mary4Mike]

June,

Yes, there is a “survey” that must be taken before every cycle of Revlimid is issued….through the drug company AND the pharmacy. The possible side effects sound scary, but so does not being proactiv with this disease. Mike has only experienced constipation with the Revlimid. We just have to be extremely observant of changes.

Mike feels the same way about the supplements. Once in a while he takes a day off from them. He also takes a multi vitamin/mineral, prostate support, P-5-P, chromate, curcumin, ginger, Vitamin D, N.A.C. 500, Probiotic, vein and circulation support, flax oil and digestive enzymes.

[Mary4Mike]

Jack,

How is your wife doing on the Exjade? Did she start right out with the recommended dose or is she working up to it?

Hope all is well and best wishes for your visit to Univ. of Minnesota……and that you get the answers you are looking for.

[Mary4Mike]

Suzie,

The http://www.dacogen.com site states that your doctor should be aware of any kidney disease (which your doctor is). It says that kidney testing would be done periodically and that the dose may be adjusted accordingly. Go to Google and type in “Dacogen and kidney function” and read what there is. This way you can ask your doctor the right questions. Is this the first chemo treatment that he has tried? Also, has your husband had a history of kidney stones and/or kidney function problems? Is he on Exjade for iron overload?

There is a lot of info out there and perhaps someone on this forum can share a similar experience. Take a deep breath and you will do the right thing. There are alot of prayers being said for the people on this forum.

Take care and keep us posted,

Mary

[Mary4Mike]

Hello June,

Mike is in the middle of his fourth round of Revlimid (started June 18). During this period of time, he had 2 tx in the 3rd round and he is going in tomorrow for a third tx. His Hgb is 9 and has been dropping. His other counts are low, but have been slowly climbing. We aren’t giving up on the Revlimid, yet. We are considering one more month if the doctor will go along with it. If and when he goes off the Revlimid, his doctor wants him to discontinue any chemical treatment to see where his counts end up. He said that he has been taking drugs to suppress his counts for so long, he wants to see where they level out at. Of course, he won’t let him go too low. He will tx as needed…it is too hard to play catch up if he waits too long for blood. Then the next step is going to be trying Dacogen again. As far as Exjade, he was off approximately 1 month and we didn’t notice any improvement in his counts. He has been back on a few weeks.

Has your father’s shingles calmed down? I had shingles when I was in high school and it is VERY painful. The area where you have them is sensitive for a long, long time. I hope he has recovered. I noticed that Mike takes the same supplements as your dad (plus a few more ).

Sorry this is long, but I appreciate you asking about my husband. This forum is a true blessing.

[Mary4Mike]

Beth,
I just read your original post. Yes, you fill out any info that you want listed in your signature in the “My Profile” link.

[Mary4Mike]

Beth,

I have to agree with Jack about getting hung up on the term “Center of Excellence”. We live in a small town with a small, but growing hospital. This is where my husband was diagnosed (by BMB) and received all of his treatments up until a year ago when his doctor left the area. We see a doctor in a neighboring town that is in a group of hema/onc, but it is not rated a Center of Excellence.

I also wanted to add that just because your husbands counts are low, this doesn’t mean he couldn’t have treatments. This is when treatment is usually begun. Perhaps he will have to be transfused to get his counts up to an acceptable starting point. My husband was transfusion dependent for a year (monthly) when he began Vidaza. It kept him transfusion free for a year before it stopped working. He didn’t really have any bad side effects from it either.

Just something to think about:)

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