Forum Replies Created
I would be interested in contacting Dr. Karp. Would you be able to email her contact information to me at: SBarbor@comcast.net.
It would be most appreciated!
Mike and I have been using your story as something positive in our lives. Thanks so much.
Mike went thru his “Induction Chemo” with Ara-C and Daunarubicin. He went into complete remission.
Consolidation of Ara-C for 7 days almost killed him. His counts fell drastically and he got a blood infection and became Septic. Thank you God for saving him.
We are considering applying for the Phase III trial for Zarnestra at Loyola University in Chicago. I know that the FDA turned down approval after Phase II, only because they wanted more people tested.
Mike also was RAEB, only with a 20Q deletion. Turned to AML on May 1, 2006, and is going to beat this beast.
Please know that Mike and I are very sorry for your loss.
Jerry, Dennis and All:
When you go to the Fight MDS Link, make sure to visit: Learn About Myelodysplastic Syndrome Here link on the site.
It contains the names of all of the U.S. House Reps that serve on the Heath Subcommittee. These folks are the first tier of voters on the Resolution. Please contact them as well.
You may also monitor the Schedule of the House at: http://energycommerce.house.gov/schedule.html
A display of these letters was placed, with the blessing of Dr. Larry Cripe at the Iniana University Center of Excellence, and generated 200 letters being sent in the first 6 weeks.
If anyone is interested in placing a display in the Center of Excellence near them, please let me know.
Let’s all pull together and get this job done!
If you just click on the red link in Jerry’s post, and then click on the link “Send a Letter to Congress” it will come up immediately.
Should you have any difficulty, please let me know at: SBarbor@comcast.net
Thanks for trying to help us.
Please accept Mike’s and my deepest sympathies. You and your family are in our prayers.
Thank You all so much for your encouragemnt and information. It really is appreciated.
We are still taking each day, one at a time, and being thankful to have it.
Nutrition-A Cancer Battle Plan is an interesting article. Here is the link: http://www.mnwelldir.org/docs/nutrition/diet.htm
Hope it is helpful to you.
Thank you so much for these great spirit uplifts. We need more of this thing to get each of through another challenging day.
Mike’s Dr. (Dr. Cripe) has mentioned the possibility of Procrit Injections. Do you know anything about these?
Mike has been holding his own, but all of the sudden his platelets are starting to fall. I know these injections are meant for RBC and not for platlets.
My family’s prayers are with you and your family. Know that your dad is feeling much better.
My husband has applied to participate in the Scio-469. I understand that it was previously tested for Rheumatoid Arthritis with good results. Isn’t it in the same family of drugs as Revlimid. Anyone else heard of it?
A couple of you have mentioned “mouth sores.” Is that something that preceded eating the pineapple, or is this something that eating the pineapple causes? Sandy
Thanks for your reply and information on Revlimid. I can’t believe the cost. Our Dr. has contacted our Insurance Company with the recommendation of Revlimid for Mike in the future, but no response so far.
This is a very “gray area” disease it would seem, and I guess a lot of us have constant on-going questions. Thanks for your help.
Thanks for your reply. Humans do get Parvo Virus. In children it is known as “Fifths Disease” or “Slap Cheek Disease.”
My 6 year old niece had it about a year ago, and Mike and I were both exposed. I broke out in a rash, but Mike had no reaction. That was during the time that his blood counts started to fall. I checked with the University of Chicago and they said that the residual effects of Parvo Virus can stay in the blood stream and produce the same effects on the blood as MDS.
If you would like more information, look on the Internet. In the search area put in Parvo Virus + MDS.
Mike is going to have the Antibody B19 Test and the IGM or IGGM test in March. We will be very anxious to get those results.
There have be cases where someone was diagnosed with MDS, and it turned out to be Parvo Virus.
Thanks so much for your response. As far as I know, the missing 20 arm is the only abnormality that Mike has. What you said sounds encouraging.
As I mentioned the BMB slide is not clear to the pathologists and we have had only “guesstamations” on the blast numbers. (Somewhere between 5% and 10%.) Not being sure of this makes me very uncomfortable. I understand that a 5% Blast Count is considered normal in some people.
They are going to do another one a little down the road. Right now it has been just watch and see.
It sounds like you are doing well. That’s great.