Preparing for transplant admission September 21st

[m mindas]

No, T-cell depletion is the type of transplant that they do. They remove the donor's t-cells so they don't attack you in some way. However, they can add them in and sometimes do if you need them. The transplant is more of a syringe-instead of a bag of blood. Even more anti-climatic.
Campath is the trial drug of NIH that is in comparison to ATG.
Are you sure it wasn't Cyclophosphamide instead of Campath? They all have different preparatory regimens...

[squirrellypoo]

Originally Posted by m mindas

Are you sure it wasn't Cyclophosphamide instead of Campath? They all have different preparatory regimens...

Nope, I'm 100% certain it was Campath. It only came out of trial at King's for transplants a few weeks before I had it last summer, but it was already so popular that the nurses said most of the patients on the transplant ward were having it in their conditioning.

[Laura]

I had Campath for my conditioning too as part of a trial. In addition to the Campath I received high dose Cytoxan and radiation.

I loved getting the Campath instead of the ATG which is usually standard.

Melissa, I guess I had forgotten the different drugs you received.

Laura

[Laura]

Debbie and Marian,

Hope the apts went well today.

Laura

[starz]

Nick had Campath as part of his regime in July, and also I think he had Tcell depleted donor cells.
In the literature we were given it said the Campath (Alemtuzumab) attaches itself onto a protein (CD52) on lymphocytes. This triggers the immune system to attack them.
It was given daily on days -8 til-4.

[Debbie W]

Thanks for the wishes, all went well and Marian and I did get a chance to meet and speak briefly before other appointments. Guess it is all a balancing act with trying to reduce infections while maintaining the benefits of a new immune system.

Long day yesterday, we left our house around 8:30 a.m. and finally got home for the night at 1:00 a.m. after stopping at the local ER to retest Mike's potassium level, same thing happened two weeks ago. Again came back in the normal range at the local ER so ???

We'll find out the blast count tomorrow from Monday's BMB as that is the only potential obstacle to an admission on Tuesday.

Hope all is well with you!
Debbie

[Debbie W]

T cell depleted and Campath are different, but I'll tell my husband that the fludarabine and busulfan are just like saline drips.

The power of positive thinking

Just three more days - all the best to you and your husband to be.

Since you are going to NYC, you can always visit two marrowforums members at Sloan

Enjoy!

[Laura]

Debbie,

So with the Potassium level? I am confused...did you get it tested in the morning and it was off so you had to go to the ER to retest it to make sure it was okay? Sorry I didn't quite get that part of the story.

Anyhow, sorry for the long day. Hopefully you two can get enough rest and relaxation time.

Sending good thoughts your way for the BM results.

Laura

[Debbie W]

Yes, the blood sample at Sloan in the middle of the day showed a higher level of Potassium, but they did not have the results until we had already left. They called when we were on the way home as they wanted it checked again so we went to the local ER that night instead of going back to the city. Same thing happened two weeks ago. I shortened the story, but obviously it did not help.

Thanks, the blasts had a slight reduction, currently 2%, they counted 4% two weeks ago, so still on schedule for 9/21.

WBC in the high 6's or low 7's, platelets in the mid 300's, hemoglobin in the 11's or 12's ... all depending on the lab, same day about 9 hours apart.

Be well,
Debbie

[Laura]

Oh okay, thanks for the clarification. That is a bummer.

I always thought it was interesting that you could have your labs draw so close apart but they could be so different!

Laura

[Debbie W]

Well that was fast! It only took about 15 minutes to inject the cells, the preparations took a lot longer. Except for about 4 days of not eating, things have gone relatively well. Counts have just dropped to near zero, so we'll see what the next week brings.

[mausmish]

Debbie, You and Mike have been on my mind a lot. Thanks for the update. It's good hearing from you that everything is going fairly well so far. Why no eating? Was it the conditioning chemo? Sending lots of positive thoughts your way. Karen

[Susan L]

So nice to hear everything is on spot so far. Did Mike get to drink ensure or some suppplement for nourishment. I did not realize it was so fast. Sending prayers your way. Keep in touch.

[forevr30]

Hi Everyone! I have just been reading all the threads on the post. My husband was diagnosed with RAEB-2 in July. His blasts are at 17%, and he is scheduled for a SCT. He gets admitted on 10/14 at Karmanos Cancer Center in Michigan. He has a brother that is a match for him and is willing to donate. His doctor has said that without the SCT he would die within a year, but it's so crazy because he has never really been sick with this. We have moved along on this journey very quickly and it is so scary! I wish the best for all of you and your famililes! I guess all the posts on this thread just made me feel that all of you know exactly what we are going through.

[Neil Cuadra]

Lee Ann,

Many patients and spouses here know exactly how dizzying it can be to go from feeling basically fine to diagnosis to transplant within a matter of months. How fortunate that Dan's brother is a match! With the transplant coming up so soon, I suggest that you concentrate on keeping Dan's strength up and reading to get a realistic picture of the transplant and recovery process. Don't forget to take care of yourself too. We're rooting for you both.

You might want to ask the doctors (soon) whether either Dan and his brother should get a flu shot. I don't know what the considerations are or what the doctors will say about it, but you don't want there to be any chance that the flu will get either of them.

[Debbie W]

Yes it was the conditioning chemo that made him nauseous, once most of the chemo was finished and he went to a regular schedule of Ativan he slowly began eating again. He is back to just having the Ativan at night to help him sleep. Foods still do not taste very good, but at least he is eating small amounts and doing his exercises. Thanks for the positive thoughts

I read your thread about making a choice on a transplant center, what relief that must be! Now I'm sending you positive thoughts on finding a donor.

[Debbie W]

He was getting sick without eating or drinking anything so no supplements, fortunately it did not last too long and hopefully the next week will not present any significant challenges. His weight is relatively unchanged and he is back to eating small amounts. The transplant was probably faster because of the type of transplant, T cell depleted, it was just a large syringe.

[Debbie W]

Great that he has a brother who is a match and willing to donate! Are they going to do the transplant with 17% blasts or is this admission for chemo to reduce the blasts?

Best of luck,
Debbie

[forevr30]

Apparently, they are going to do the transplant with the 17% blasts. He is scheduled for 6 days of chemo, a day of rest, and the next day is the transplant. After reading about this, it seems this is unusual? Most of what I am reading suggests they do NOT do a transplant with blasts so high. I'm confused.

[mausmish]

Yes, we definitely can identify with what you and your husband are going through. On the other hand, one thing we've learned is how individual this disease can be from person to person in some ways. Plus each patient, doctor, and facility will be different. It's great that Dan has a matched sibling donor. I thought it is common to do some sort of consolidation therapy to reduce the blasts before moving to the pre-transplant conditioning chemo but I am not a medical professional. Do you have a good rapport with your doctor? It wouldn't hurt to ask why they decided to move forward without trying to reduce the blasts first. Perhaps there are good reasons specific to your husband's case. Or you could try to get a second opinion.

[Debbie W]

I can only speak of my husband's treatment at Sloan, they wanted blasts under 5% before transplant. Each case and each center is different in their approach. If you are reading some conflicting information, then a few questions are not out of line.

It is a very confusing time and maybe some additional information will help to understand the process. You can also contact another center to get their answer and standard treatment given your husband's general condition.

Let us know how things progress,
Debbie

[mausmish]

You and Mike continue to be on my mind a lot today. Glad to hear he's doing well so far and getting his appetite back. Sending lots of positive, healing thoughts your way. I hope you're taking care of youself, too, getting enough rest.

[Debbie W]

All is going rather well and my sister from the UK came by to give support to both Mike and myself. Appetite is OK, as long as he is eating something they are happy. Friday he starts the Neupogen shots, just need to make it through the weekend. Check your private messages.

Warm regards,
Debbie

[starz]

Hi Debbie,
Sounds like everything is going well for Mike. Nick couldnt face food much, and was very specific about what he would eat. When he got out we realised his taste had changed and he seemed to taste the bitter element of foods, even chocolate was bitter. That didnt last too long, and he found tomato ketchup or brown sauce helped at mealtimes. All is back to normal now, and has been for a while.

[Debbie W]

Mike had a few days where he did not eat, first during some of the chemo and then after transplant when he had some mouth sores. The other days he tried to eat something, even though it took awhile to eat a cup of yogurt. He did say bland items were more tolerable and nothing really tasted good. His counts have begun to come up and they are talking about a possible discharge the end of this week.

I'm so happy to hear things are back to normal for your husband.

Kind regards,
Debbie