[LuAnn]

Thank you all for your info. We spoke with the dr. today and he did say the enlarged spleen happens with MDS with procrit contributing to it. We spoke about radiation to reduce it and his concern is dad’s HGB could go down to 4.0 since he is holding around 7 or 8. He wants to wait and see before reacting. I’m in agreement with that.

We also found out that dad’s itch probelm could be result of the enlarged spleen. We thought it was a reaction to his many meds. Has anyone had extreme itching problems? The dermatologist prescribed some new creams for dad and hopefully they will help.

Jack – may I ask what the Zanestra is for?

Thanks everyone,

[LuAnn]

Hi Jerry,
My dad has been on both Procrit and Neupogen shots for years. It maintained his HGB (which is his main problem w/MDS) until recently when he went on Vidaza. He still receives Procit shots 3x/week (6,000 units each shot) and Neupogen 2x/week (don’t know that dosage). Dad is a trooper so I don’t know if the shots hurt him cause I doubt he would show pain in front of me. But I see the nurses pinch the skin for the injection and one nurse even has him put his arm behind his back. Don’t know if these will help you but may be worth trying? Good luck!

[LuAnn]

Hi all,

My dad completed 3 6-week cycles of Vidaza and his quality of life really decreased in that time. His main issue is HGB counts and instead of increasing the amount of times between xfusions it decreased it and dad had to sometimes have 2 xfusion in a week following the series of 7 shots. Just as his HGB started to increase, he had to start another series of shots and the xfusions started again. He stated with 100% strength but the dr. reduced it to 75% when he was the count reaction to the shots. After the 3rd cycle the dr. decided this drug was not working and is not going to use it anymore. I was very happy about that. It took a while for the Vidaza to get out of his system but I believe it finally has left and now we are in the wait and see mode. Everyone reacts differently to these medications but I felt from the first series of shots there was no improvement. He has always been on procrit (18,000 units a week) and Neupogen (2 shots a week) and this continued thruout the Vidaza shots.

We are now looking into Revlimid however dad is not 5q. I’ve submitted a questionnaire for support to receive free based on compassionate care basis cause dad has no medicine coverage. As you all know the monthly cost is $7500 and the company is willing to charge 50% but that is still a significant expense. The company who also supplies his Exjade has informed him of a significant increase in the expense. Is it always about money??? This is very frustrating as I know you have all experienced. Hopefully we will be able to work out something and I asked the dr. to start looking into Decogen as an option.

Right now I’m just planning a few events for him to enjoy the summer and that is the main goal. I’m concerned that any new med will affect his quality of life again.

I guess I rambled a little bit more than I planned. Thanks all for listening and for always sharing your experiences.

[LuAnn]

Hi, My dad was on Vidaza and had pretty severe reactions to it so the doctor is going to prescribe Revlimid for him. I checked out the following site which discusses how the drug is to be ordered and also has information on the Patient Support System (PSS) Program at Celgene. It’s a program that offers financial assistance for those with limited insurance coverage. Not sure how this works but we are going to give it a try. Has anyone applied for PSS assistance? Hopefully this info will be of help to some. Good luck everyone!

[LuAnn]

Oops! I forgot to add the site: it’s http://www.revassist.com

Good luck!

[LuAnn]

Jan, I’m sorry the Revlimid had such a difficult effect on your husband. My dad was on Vidaza but had a difficult time this past cycle and the dr. is now looking at Thalidomide and Revlimid as options even though he does not have the 5q. I’m concerned about the side effects of both drugs but with no other options I’m not sure of the choices we have. My prayers are with you and possibly over some time your husband will recover from the effects of the drug.

[LuAnn]

Hi Lydia,

Thanks for the vinegar tip. The itch was keeping my father awake at night so the dr took him off so he can get some relief. If the itch returns I’ll try this. Thanks!

[LuAnn]

Patty,

That’s such promising news. My dad agreed to go to a chinese medicine man and we went last Sunday. He is very conventional but agreed to try the herbs. He drank the tea for a few days but came down with bronchitis so he stopped all. But I’m hoping he’ll go back when I tell him your news. Thanks for sharing with us.

[LuAnn]

Dear Jaggyone,

Sorry I did not reply sooner but I’ve been thinking about what to say to help you thru this difficult time. Life is challenging enough without illness but when we add in dealing with MDS it sometimes seems unbearable and overwhelming. I’m the caregiver for my parents and have personally faced 2 life threatening illnesses myself. What gets me thru the difficult days is my faith. I know that God has put me right where I am supposed to be and will give me the strength to deal with whatever comes along. It’s not easy but I find strength in that. My dad is going thru a difficult time with MDS now and knowing this is where we are meant to be helps me be strong for him. Don’t know if this helps but I hope you can find some peace in this. My prayers are with you and your husband.

[LuAnn]

Well we went to see Dr. Ping Fu today and I was very surprised that my dad was receptive to chinese medicine. After the consultation he agreed to start on the herbal tea and also try acupuncture. We are at the point where we are open to all possibilities. The dr. said we should see a quick result depending on how often he drinks the tea and gets acupunture. We’ll try to be aggressive but time will tell. I’ll let you know how he’s doing.

[LuAnn]

Hello all, my dad has been on exjade for about 2 months now and the dr. said it will take about 3 months to see a result, if any. If no result they may increase the daily dosage. Has anyone experienced an itch and rash? My dad has this and takes 2 Benadryl, Atarax and cortisone cream but it doesn’t help that much. Any suggestions?

[LuAnn]

Hi all,
Well dad went to the dr. today and his HGB went from 7.9 to 8.2 Not a major jump but that means he will be xfusion free for the weekend. We’re hoping the Vidaza is out of his system and that his HGB will go even higher. The dr. reviewed 3 options; thalidomide, revlimide and a clinical trial at Cornel headed by Dr. Feldman. We’re going to get the Thalidomide and the drs office will try to get Revlimid on a compassionate basis though there is no guarantee that will happen. We’ll check out the clinical trial but it involves placebos and not sure that is what my dad wants. I’ve been researching chinese medicine and found an acupuncturist right in town that treats many cancer patients. I made a consultation for this Sunday and will let you know how it goes. Take care everyone and God Bless.
LuAnn…

[LuAnn]

Patti,
I’ve started researching the net but there is limited information. I’ll start calling some folks tomorrow to see if I can find a chinese medicine guy. I’m not sure who Lucy is but I will definitely share the name of the guy I find. Dad is 82. His HGB went up to 7.9 from 7.2 after 2 units of blood. We are meeting with the doctor tomorrow to discuss alternative. We will be looking into Thalidomide and Revlimid as a compassionate medication. He is not 5q so not eligible to receive the Revlimid. Thanks! I’ll keep you updated.

[LuAnn]

Thanks everyone for replying! I read Patti’s post and am excited. My father is 82 (will be 83 in May) and has no chromosome abnormality. I don’t have all the specs on his MDS but will get them and add to post. He is on Exjade and gets Neupogen 2x/week and Procrit 2x/week. He received one 6-cycles of Vidaza but that made all his numbers jump around. However he was xfusion free for 3 months. About 2 weeks ago the dr. started his 2nd cycle and after 7 shots in a row, his numbers started to jump. Today his HGB was 7.9 after receiving 2 units of blood yesterday. This is his 3rd xfusion in 2 weeks. Doc thinks Vidaza is still in his system and affecting the xfusion. I hope he’s right. I read Patti’s post and am very excited. I live on Long Island in NY and will stat to look for a College of Chinese Medicine. Thanks for the encouraging news Patti and good luck to all. I have been on and off this forum for a number of years and am always amazed at how knowledgable everyone is. Thank you for sharing.

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