[Cindy]

Hi,
I had a mini stem cell transplant in January 2009 at the University of Nebraska. The treatment consisted of a lower dose of chemotherapy and no radiation. The hospital portion was one week, just for the chemotherapy and the stem cell transplant.

The day after the transplant, I moved into another section of the hospital with my husband as caregiver. This part was like a hotel suite. We were there for two weeks. Our next move was to a furnished apartment 20 minutes away for the remaining 86 days. Since I did not have any acute GVHD, we were able to return home in 72 days.

Consider talking to the social worker assigned to oncology or transplant team regarding availability of furnished housing to use after the hospital. That is how we found our place.

If you have further questions, I will be happy to answer them. So far I have been very please with the results of my transplant.

Cindy

PS: My donor was my 57 year old brother.

[Cindy]

Kim,
In October of 2008, I developed AML and had the induction chemo. I had very few problems with it – a little diarrhea and a couple mouth sores. Then in January 2009 I had a mini stem cell transplant and had very little problem with it also. Research has indicated that the stem cells transplants work just as well as a BMT and it is much less invasive for the donor. If you have any further questions, I will be happy to answer them.

[Cindy]

Patti,
I only had rbc tranfusions prior to the start of Exjade. The platelets dropped from 290 to 155 in 45 days and then started Revl. They then dropped to 12 in 30 days (was off Revl with in 16 days). That is when I had the platelet transfusion. I feel that there may be a correlation. The platelets have never recovered above 59 and I haven’t had any bruising. However, not enough has been reported to substantiate this according to my hemotologist. I hope there are some studies for this soon.

Cindy

[Cindy]

I started with Exjade in March and with Revlimid in May. I was only able to take Revlimid (Revl) at 10mg for 10 days when both platelets and WBC’s lowered to the point where I needed Neupogen and Platelet transfusion. I was off Revl until my counts became acceptable in July and used Revl at 5 Mg for 20 days when the counts were again too low. At that point my hemo and I stopped Revl and Exjade. I was able to start Revl 7 days later (5 mg every other day in early August) as the counts became acceptable again and I stayed on it this time. My Hgb is 11.7; whites at 3.6 and the platelets are holding at 59. I haven’t had a tx since early August Before I started Exjade my platelets were normal and my whites were 3. I noticed that those two counts were slowly decreasing and not recouping when I had transfusions as they did previously prior to starting Exjade. I think Exjade does create problems with wbcs and platelets, and according to my hemo, the company doesn’t think this is the case. We will have to wait out the results of further studies on Exjade.

[Cindy]

I had the same problem with Exjade – lowering of the white blood cells. I am also looking at it possibly putting me into thrombocytopenia (low platelets) when I added Revlimid to the mix. I have been off Exjade for three weeks and my WBC’s have improved.
I restarted Revlimid and my platelets are going down but not as fast. Hgb is doing well this time.

[Cindy]

Susan,
I am currently trying Revlimid. In my case, I had both low platelets and low neutrophils about 14 days after taking the drug. I was taken off the drug at that time to allow time for both to return to a level where I can try a lower dose of Revlimid. My platelets have returned to a level where I can try the lower dose of Revlimid. But the neutrophils haven’t reached that point yet. I hope to be back on the drug within the next two weeks.

One starts at 10mg and after the side effects, (which are different for everyone) they go to 5mg in different configurations depending on your numbers.

Look at the Revlimid web site – It is very informative – just google Revlimid.

Cindy

[Cindy]

Lindajo,
I also experience cognitive changes and also notice a difference with the three to four weeks between transfusions. I find I can’t focus on TV near transfusion time and, at church, I miss saying words to psalms and I am reading the words.
I was a person who didn’t need lists to remember things that needed to be done or dates of future events. However I now double schedule myself if I haven’t checked my calendar.
Thankfully I don’t have much trouble at work so far but the information is so ingrained. I do forget people’s names tho.
I agree with you, more research needs to be done on this at the center of excellences.

[Cindy]

I have signed up for Exjade this week and am waiting for confirmation. The Novartis rep told my hemotologist that he could be contacted if I don’t get the drug in a timely manneer (2-4 weeks). He also told him there is a Patient Assist program to help pay for the drug, so ask about that. You might want to email or call Novartis.

[Cindy]

Please use our names as before:
David and Cynthia Hill, St. George, KS
Brian Hill, Parsons, KS
Cheryl Hill, State College, PA

Thank you.

[Cindy]

Please add the following names to your letters.
David and Cynthia Hill
Brian Hill
Cheryl Hill

Thanks you for writing this letter and allowing us to sign on with you.

[Cindy]

Karen,
The letter was well written. Thank you for taking doing this. Please add

David and Cynthia Hill
St. George, Kansas

Cheryl Hill
State College, Pennsylvania

Brian Hill
Parsons, Kansas

[Cindy]

Have you gone to the Center of Excellence at the University of Nebraska in Omaha. They are very informative and helpful.

Good luck with your mother.

[Author]

Posts