He didn't say the particular type of chemo as of yet. I guess we will find that out after the biopsy results and they decide if he will continue with the same treatment or switch to the less intensive one. If she switches, then it will save her driving to Houston for her chemo. She would be able to have it here locally. I assume that means she would no longer be part of the clinical trial she was in at MDA. That's why she had to go there for the chemo each time.

She is really hoping to switch to the less intensive chemo. He told her she would be able to do more and that it would not knock her down so much each time she had a round. They did her chemo last time when her platelets were at 43 because it had been so long between rounds and it really made her very, very sick.

One of the nurses came in the room and mistakenly told her that he was going to admit her for this round of chemo that day. Her platelets were only 30! She had a meltdown and told them she could not handle that again. She is not normally admitted for the chemo so she thought he was really planning to do it. The nurse had just read what he planned to do if her numbers were up enough.

All in all, I think it was a good visit. In listening to the doctor and his nurse practitioner, I think they are thinking the biopsy will be good.

Debbie,

I'm sorry to hear Jo's platelet have dropped again. I know how defeated you feel but please rest in the comfort you felt after your doctor visit on Friday. As Cliff said, platelets are so volatile. When thing my med team explained is that the chemo can actually scar the marrow and cause low platelets. Praying Jo's bmb is as Pain free as possible and clean clean clean.

Julie

Well, my sister's lab dropped again yesterday. Her WBC is now 1.5, blood 9 and platelets 29. They continue to fall, five weeks now. Next Friday will make it 3 months since her last consolidation treatment. She had her BMB last Friday but still no results. I take that as good news I guess. Surely if something had shown up on the preliminary report they would have called her by now. The doctor's office that she gets her blood drawn at told her to come earlier for her blood work on Monday because if it continues like it has, she will likely need to start blood transfusions again.

Has anyone ever experienced getting all the way up to almost being able to have the next round of consolidation and then the numbers falling back down to where you need transfusions again? I know they fluctuate, but this has been a steady drop and it has been 3 mo since last chemo. Should they be continually falling like this? I'm going to get her to call MDA today and ask for at least the preliminary report on her BMB. Even in a clinical trial, they should have that by now, right?

Debbie,

This news is so discouraging. To answer your question, no I have not had my numbers drop that significantly for this long. There may be other that have. I agree jo needs to push to get preliminary bmb results. If her wbc is 1.5 it appears she may be neutrapedic. Make sureshe is wearing her mask. Please keep us posted, ppress for results and know I'm praying.

Julie

I'm SO sorry this is happening. I do know that you can call he Doctor's Physician's Assistant and get the preliminary BMB results. I had a BMB at MDA on Wed and I called yesterday and got my blast count. I'm so sorry that I didn't see this yesterday so she could call on a week day.

Hang in there

Debbie,

Are your sister's doctors entertaining the possibility of some kind of allergic issue. If they do a BMB, they should see increased cellularity which would point to that. in any event, did they consider IVIG?

Let me know.

Cliff

Thanks Cliff, I have told her what you suggested. She has an appointment this Friday to see the doctor at MDA again and get results of biopsy. Since they haven't called her as of yet, I still assume this is good news. I asked that she put the question regarding allergic reaction in her notes on her phone (she forgets so she has started to put questions in her phone when she thinks of them.)

Since she has had that rash for quite some time, maybe it is some type of allergic reaction keeping her numbers going down. At her visit on the 10/3, they gave her some type of gel because the rash was driving her crazy with itching and sometimes flaring up even more and becoming painful. They said if that didn't work, then they would give her I think Diflucan. So far the gel has helped only minimally. I think she will see if they will give her the Diflucan at her visit Friday.

With the rash, you would think they would have thought of an allergic response with the numbers but we will see Friday I guess.

Thanks again, Debbie

Good point Cliff. When I had a c section (years ago) they gave me an antibiotic that I was allergic too and within a few hours my platelets dropped to almost nothing. They were very concerned since I had just had a c section and kept me in a private room with a nurse by my side until my platelets starting recovering.

Karen

Debbie- I'm sorry to hear about the continue drop I know how stressful that can be my thoughts and prayers are with you and Jo and by Friday you'll have some definitive answers - the waiting is the absolute worst. We are still waiting to find out if Tony's 100 percent donor at his hundred day mark, it's Wednesday and it's been agony waiting!
Always in my prayers
Lea

Sis saw doc at MDA today. BMB was good and showed she should be producing platelets. However, numbers down again when drawn today at MDA.

Cliff, they are going to try the IVIG to see if it will help production. If it does then they want to stick with stronger chemo. If not then marrow just not able to handle the stronger and they will go to weaker one but do it for a year longer.

So, good results I guess. Relieved about BMB.

Debbie,

Great news-clean marrow!!!

As a recipient of reduced dose with great results, please dont be too alarmed. In fact there have been several studies that show no difference between the 3.0 and 1.5 dose. Lisa from Australia is chemo only and had Induction with two consolidations. She is over two years out. Jo is at the best place on earth to be treated, her team will figure this out.

God bless,

Julie

Fantastic!!!!

Great news Debbie.

Karen

Knowing how painful the BM aspirations can be, and since I've done these a couple of times at MDA, ask for it with sedation. Unless you are worried about sedation, it takes the pain factor out completely.