[LuAnn]

Hi,
Sorry you and your mom are going through this. My dad has MDS/RARS and has been treated with initially neupogen and procrit shots, then Vidaza and is about to start Revlimid (5mg every other day). While the Vidaza did bring up his HGB level it also increased the frequency of transfusions and made him very sick and tired. So there was a decrease in quality of life. Following that the dr. stopped neupogen and procrit because they enlarged his spleen to a dangerous size so for a while he has been on nothing but transufsion dependent, one every two weeks or so. He was He just started 5 mg of Revlimid every other day. He is not 5q but we have a friend who also has MDS and is not 5q and the Revlimid has made him transfusion free. My concern is it’s so toxic and dad is frail it can really affect him. We haven’t worked out the insurance yet as we are trying this for a few weeks to see if he can tolerate it. In Jan he was on 10mg Revlimid daily but it was too much for him and he had to stop. Hopefuly the reduced dosage will help. While I’m not a doctor, I believe we are the patients advocates and I recommend waiting a while to get the Vidaza out of your moms system before stating the Revlimid. We waited till my dad’s CBCs were almost normal and he was feeling better. We spoke to the dr. and he was in agreement with us waiting. Good luck and keep us informed.

[LuAnn]

Hi Jim, Glad exjade is working so well with you. My dad had similar results but then he broke out into the rash with extreme itching. He had to stop a while and then went back on. He was OK for a while but then the itching started again recently. Did you have this side effect? It seems other than stopping the med, there is nothing to stop the itch.

[LuAnn]

Hi Pat, Dad has had a slight fluid problem and we treat it by monitoring his weight and giving him Lasix and potassium daily. However 2 weeks ago he started Revlimid and he retained much more water than usual in his abdomen and legs. The dr. added a third dieuretic to take nightly along with 2 Lasix and potassium a day. He was also prescribed Flomax to help his prostrate which also helped eliminate the fluids. The dr. stopped the Revlimid on Friday and dad lost additional fluid since then. If Chuck takes Lasix or another dieuretic check with the dr. to see if he should take potassium also. If you don’t take potassium with the Lasix the pulse is affected and can go very low. Extreme fatigue, tiredness, pale color and coldness are the symptoms. My dad didn’t take the potassium the day he received Lasix during his transfusion and his pulse went down to 40. I gave him a banana, one potassium pill and a glass of orange juice at 1/2 hour intervals and his pulse went up to 64 and he felt much better. I’m not aware of the cornsilk Patti references but will research it.

How low did Chuck’s HGB go to get 3 units? I’ve never heard of someone getting 3 units before. I know dad gains about 3 lbs. when he gets 2 units of blood and it takes a few days to get rid of it.

Hope this helps.

[LuAnn]

Eve,
I’m so sorry to hear about your dad. My prayers are with you and your family and always remember the special times you shared.

[LuAnn]

Hi Wendy,
I’m sorry to hear about your dad and I know how difficult it is to be a caregiver. My dad was dx in 1996 w/MDS RARS which is the low risk version. We have been very fortunate as the MDS had been under control up until about a year ago. Prior to that he survived 2 sub-dural hematoma surgeries followed by an aortic valve replacement and then a hernia removal. His oncologist is very informed and helped get him thru these traumas. All the while dad fought to feel better. He has a very strong constitution and drive naturally but he has also been on Prozac for a while which helps him cope. Perhaps that might help your dad deal with everything he is going through. Also, Neil always gives great information and insight. (Thank you Niel!)

My dad has been having a very difficult time (3 xfusions this past week; Sunday, Wednesday and Saturday), and I’m going to show him Niel’s post and try to get him to try the berry. He’s 83 and traditional so it will be difficult but worth a try. Good luck and keep us informed. This forum is a God send and it’s amazing the information shared. You are all in my prayers.

[LuAnn]

Hello everyone,
For those who have had a rash, can you please explain what it looks like? My dad started Revlimid last week and has been on Exjade since the Spring of ’06. While he has had itching since the Exjade, he never broke into a rash. However this week welts broke out on his legs. They started as little red dots and then grew to welts. Also, he experienced veryloud ringing in his ears, does anyone know if this is a side effect of the Exjade. It’s hard to determine if the Exjade or Revlimid is causing these problems.

[LuAnn]

Thank you Patti, these are some great ideas. The aloe vera is an option and I will speak to his chinese doc about concentrating on his spleen and his oncologist about the Ultram. However his platelets are in the low end of the normal range so I’m not sure the cod liver oil is an option at this time. We’ll have to see how the Revlimid affects them. I was also told that prednisone might be a next step to incorporate into his med regimen which is quite extensive at this point. Thanks again and I’ll let you know what happens.

[LuAnn]

Hello everyone,
Dad started the Revlimid on Monday and his itch is getting worse. It’s internal, no rashes. I’m at a loss what to do next. We went to a dermatologist on Monday and prescribed OTC med and cream which helps to take the edge off but not get rid of the itch. Anyone have any suggestions?

[LuAnn]

Hi Dottieb, All medication was stopped on my dad because he has an enlarged spleen. What did John do to decrease the size of the spleen? I was told it would not go down.

[LuAnn]

Patti,
I’m hopeful the herbs and tea will kick in after a while. Right now, dad is feeling more energetic since he started but I think he is getting tired of the regimen, 18 capsules and 3 cups of tea a day and acupuncture 3x/week. But I encourage him to continue going. I’m hoping the herbs/tea will reduce his spleen so he can resume taking the Procrit again. Before the dr. stopped the Procrit he was being xfused every 2 weeks. Now it’s once a week.

In reading this line there seems to be some controversy about the interraction of Revlimid and Exjade. Dad is on 2000 mg a day of the Exjade and it’s holding his iron level so the dr. doesn’t want to decrease it. I’ll speak with him about this for his opinion. Hopefully dad will start the Revlimid next week if his numbers ar OK.

Thanks for your input and I’ll keep you posted. This disease has so many issues it’s difficult to make a decision. Thank God for this forum and everyone on it!

[LuAnn]

Hi Patti, my dad was taken off all medication and turned to taking chinese herbs and teas. He saw a difference. While his HGB did not go up he does have more energy. However we found out that he will be starting Revlimid next week and I was wondering if he can continue with the chinese herbs. Is your MIL on herbs and Revlimid?

I appreciate any info you can share.

[LuAnn]

Sarah, we wemt to a dermatologist and he prescribed a medication that is helping dad. I don’t know the name of it but it’s like an antihistamine. He also prescribed a topical anestetic which is also helping.

My dad was prescribed Lyrica which is like neurontin, by his neurologist for his neuropathy. It helps but hes taking so many pills it’s hard to get them all in.

We got some good news today, dad is getting Revlimid. It’s being expensed by a philanthropic association. I believe he will start on it next week. We’re hoping it’s what he needs. Take care…

[LuAnn]

Sarah, Thank you for sharing this. Was the dr. able to prescribe anything to ease the itch? My dad has been to numerous doctors and they are more concerned with the more serious side effects of MDS but this is really affecting his quality of life as I’m sure you are aware since you also experienced this.

[LuAnn]

Jim,
This is great! My dad is also xfusion dependent and you’ve captured the essence of many of our days! My dad is not a candidate for a BMT so he does not receive irradiated blood. To date he has 3 antigens, A,E and K. According to the blood bank these are common and so far no issues. Good luck.

[LuAnn]

Jack – good luck with your biopsy! I’m glad you found a medication that is helping you. I think that’s very promising for all of us.

Bill – I’m sorry to hear about your mom. My prayers are with you.

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