Quote:
Originally Posted by MagicBob
Hi Patti and Dean,
I was trying to respond sooner, however we have been mentally and physically kaput!
Our visit to Johns Hopkins on August 5th was a very difficult and long day, as news wasn't good, beginning wiith very low WBC 0.7, ANC 0.3, PLT 7.
Then met with the MDS specialist, and he informed us the bone marrow isn't producing enough good cells and Chemo is no longer active. Also, stated that "I don't have any other type treatments to offer". But I want to do an
aggressive transfusion plan for the next 60 days, in hopes that it may start to stimulate marrow.
I started the transfusions on August 9th, and will continue every week, with
CBC and Oncologist every Monday and Thursday, Platelet transfusions every Tuesday and Red Cell and Platelets every Friday.
If no response, there is a Clinical Trial starting late September, and the Doc gave us 13 pages to read, and digest.
Lastly, the doctor said that I can't let you go back to Pa. with a Platelet count of 7. So, at 4pm I was given 12 units of Platelets, and began our drive back home and all hell broke loose. I got the chills and then went into violent shaking (Rigors).
We were about 5 blocks from the hospital and our daughter did a U-turn back to the hospital. Three hours later we were on the road again, and arrived at home at 11pm.
I have been reading your other posts and hope to respond to you later.
Give our very best to Dean.
Your are both in our prayers,
Bob and Dru
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Hello Bob and Dru,
I can certainly understand that you are physically and emotionally drained, you have been through so much since your last post.
Your visit to Johns Hopkins almost sounds like Dean's visit to Moffitt, luckily we didn't have to stay for a transfusion, although Dean's platelets were at 8, we were able to have the transfusion at our local hospital the next day. Dean has only been receiving 6 units of platelets, and recently just "single donor" platelets, so far he has not experienced anything like what you went through. How did they stop the shaking and chills? That would scare me.
Last week Moffitt called and asked Dean to have his cardiologist do an EKG and fax it to them. Yesterday the trial team coordinator spoke to Dean and told him that he couldn't take part in the clinical trial because of his heart. Many years ago Dean had a few heart attacks and surgery, he has not had anymore problems since the mid nineties, but he is on medication. Apparently Moffitt feels his heart has too much damage to permit Dean to be a part of any clinical trial they are doing, so they are telling him there is nothing more they can do.
Our local oncologist said he would be willing to try Vidaza, but right now Dean's counts are extremely low, and he would like them to be higher before starting treatment. It seems like Dean is almost on the same schedule as you are. During the last three weeks, he has been receiving packed red blood cells and platelets twice a week, and a weekly shot of Procrit. His counts still aren't great, yesterday Dean's platelets were 5, so at 7:00 a.m. this morning he is going to Mease Dunedin for a transfusion of PRBC and platelets. His hemoglobin is also low.
It feels like the transfusions aren't really helping, so Dean is becoming discouraged. He is still so very weak and short of breath, he is eating, but very little. After the bad news yesterday from Moffitt, he has told me he doesn't want to continue any treatment, but hopefully this morning he will feel differently. It is his decision, although we talk about it together, I want Dean to be the one to tell me what he wants to do.
I hope you can do the clinical trial in Johns Hopkins, Dean really wanted to be a part of the one at Moffitt.
I really wish it would have been better news for both of you.
We will keep you in our thoughts and prayers. Thank you for writing and letting us know how you are doing.
Sending you lots of love, hugs, faith, hope, prayers and some smiles.......
Patti and Dean