Countdown!

[Robsocal]

I just got back from Kaiser Los Angeles. My donor is a 39 year old male and is a perfect match. Now we both start our testing (another BMB for me) and I should be admitted to City of Hope in about a month. I know I should be happy, and I am, but I have such a feeling of dread as my doctor explained the risks. I need to put that behind me, think positive, and get through this.

[Ruth Cuadra]

Great news about your donor!

I understand that feeling of dread that comes when you have to listen to the litany of risks and possible complications associated with having a transplant. Remember that the doctor and hospital are required to tell you absolutely everything that could possibly go wrong. It doesn't mean that any of it--or even a small fraction of it--will happen to you. Once my husband and I had made the decision for me to have a transplant, we listened when the time came and then closed our eyes and signed the consent forms. It turned out very well for me at City of Hope. You are in excellent hands.

Regards,
Ruth

[Robsocal]

Thanks Ruth, I always enjoy your words of inspiration and encouragement. One option I was given was the choice between stem cells and bone marrow. I was told there was little difference, but they are doing a study on which is more effective for long term survival. Any opinions would sure be appreciated.

[Ruth Cuadra]

Rob,

Nice to hear you're inspired. Thanks. My understanding about the stem cells vs. bone marrow option is that stem cell transplants let the patient recover a bit faster but have a higher chance of relapse while bone marrow transplants take longer to recover from but have somewhat less chance of relapse. I didn't have the choice when I had my transplant because it was before stem cells were routinely used. Our research expert, Birgitta, may be able to provide some references to current research on this topic. Birgitta?

Regards,
Ruth

[Birgitta-A]

Hi Rob and Ruth,
Thank you for the compliment, Ruth ! Since I was 67 yo when I was dx I have not read much about SCT or BMT but I have tried to find some references. One is from fall 2008 but the other is quite old (2001). They obviously still don´t know the answer.

When you see the high mortality rates, Rob, you should realize that many patients have AML, that is a very dangerous disease.

https://www.team-psa.com/DOT/fall200...ment%20N31.doc

http://bloodjournal.hematologylibrar...ull/98/10/2900

Conclusion from the article from 2001: "Does the stem cell source matter? Favorable disease-free survival rates after SCT, particularly in patients with advanced-stage cancer, give SCT an advantage over BMT. "
Kind regards
Birgitta-A

[Beth I]

Hi, Rob. I don't post much, but I wanted to let you know that I'm sending tons of positive thoughts your way. I, too, am in my 40s and, if everything goes as planned for me, I'll be undergoing a SCT this summer. My sister is a perfect match, so I am very lucky that way. I will be watching your progress closely and hoping that you sail through with no problem.

Best best wishes from the right coast.

Beth

[Robsocal]

Thanks again, Ruth, and a special thanks to Birgitta-A for the research - all much appreciated. It sounds like a coin-toss really, and this is what my doctors told me. They said if my donor is from Europe is will be bone marrow, if from the States it could be either one. I am pretty confident my donor is from the States because I had so many matches. I have decided to take part in the study and let the method of extraction be chosen for me. I am awaiting a call today to give me an idea of the timeline for Hickman installation, etc. No turning back now! And to Beth, thanks for your positive thoughts and best of luck on your journey as well.

[Robsocal]

Just got word that my donor does not wish to take part in the study and is only willing to donate stem cells, so stem cells it is! Monday I start the lab work, x-rays, EKG, etc. Also one more BMB, then will be having catheter put in. Mom has reserved one of the villas and will be staying there as often as possible. Question - someone I know who has been through a transplant mentioned something about a nasty smell during chemo and that I need to bring hard candy, gum, whatever to combat it. Anyone had a similiar experience?

My chemo drugs will be Cytoxan and Busulfan, with daily doses of Dilanpin (for siezures) This takes place over 5 days, then 2 days radiation, followed by a day of immunosuppression drugs. February 18th - day "O."

[Birgitta-A]

Hi Rob,
Good luck with the chemo treatment and the SCT!
Kind regards
Birgitta-A

[Ruth Cuadra]

Hi, Rob.

I'm glad you won't be waiting around much longer to get on to the business of your transplant. Regarding a nasty smell, I don't recall any related to chemo but some people react to the smell of the preservative that the stem cells come in--something like creamed corn, if you can imagine that! However, the infusion of the stem cells themselves is fairly quick so your exposure to that smell would be limited.

Keep us posted.
Ruth

[michelle_lapuz]

you can do it!! we are all rooting for you

[flowerlady]

Hi guys,

I too am on the countdown...looks like M.D.Anderson for me...sometime within the next 6-8 weeks...finishing 2nd round of Vidaza and then BMBX and then time to put my boots on and make the trip...My brother is my lifesaver at as he is my match. My family has been incredible... I have been blessed in so many ways...Scared...yes, but, very hopeful...Ruth, and anyone else that has gone through this I would certainly appreciate any info you can share...

[Robsocal]

Hi Everyone, yesterday's BMB is over! They are never fun but it wasn't unbearable. Today I did a lot of breathing tests, about two hours. Many appointments ahead as I get down to the wire. Less than two weeks now. Like Flowerlady, I am so thankful for a great family and wonderful supportive friends. Looking forward to kicking this stinking disease out of my body once and for all!

[Beth I]

Hi, Rob. You must be so relieved to have the BMB behind you (no pun intended). My "countdown" is in terms of months, not weeks or days like you and Flowerlady, but I am still so keenly interested in what you are going through. I noted in an earlier post that you would be taking medication for seizures - what's that about??? Is that specific to you or does everyone in their protocol get it? Also, the breathing tests - what are those for? Sorry for all the questions, these are just things I hadn't seen before in relation to transplant.

Thanks and continued best wishes,

Beth

[Robsocal]

Hi Beth,

I just got back from the hospital after about eight hours of tests and I will tell you it is GOOD to be home!

Let's see if I can try to answer your questions... The dilanpin (anti-seizure med) is given daily during chemo and that's all I know. I have appts. at COH next week and will be sure to ask what might cause a seizure, as I have no history of anything like that. The breathing tests that I took a few days ago are to check my lung function because I had pneumonia back in October. (results show my lungs are excellent, very good news.) Today was grueling. I had routine X-rays this morning, followed by a MUGA scan which checked the condition of my heart. They give you an injection, have you sit for 20 minutes, give another injection, and then you lay down and this machine takes images of your heart for 18 minutes. Then I had to do another CAT scan, which took 3 hours because they have you drink that nasty fluid, wait an hour, drink more, wait another hour, insert your IV, then scan you.

Next week I have 24 hour urine collection, then a lot of bloodwork. The reason for all the testing is to make sure my body is in good enough shape to take the rigors of transplant.

I will have a laptop with me at COH and will give you updates anytime you wish!

[Beth I]

Wow, Rob. It just goes on and on and on. Thanks so much for sharing the details of what you're going through. Since I've already met with the transplant doc and nurse at Dana Farber, I knew there were pre-tests. I just realize how many and how all-encompassing they were. I am so impressed with your positive attitude toward all of it. You must only be a couple of weeks away from admission. I am thankful that you're sharing your experience.

Good luck with the rest of your tests.

Beth

[Robsocal]

Just returned from a long day at City of Hope. My transplant has been set back one week to February 16th, reason being I managed to catch a cold and that could pose a problem, so better to err on the side of caution.

So, one more follow-up Wed. Feb. 11th, start DILANTIN Fri. Feb. 13th (ewww!) Admission Mon. 16th, then Busulfan for 5 days, followed by Cytoxan for 2 days, then Tuesday, 2/24 start Tacrolimus, (immunosuppressant.) Wednesday, Feb.25th, the big day "0"

My blood type will change from A+ to O+! Kind of cool really. By the way Beth, I did ask Dr. about anti-siezure medication. Siezures are a side-effect of Busulfan and meds are given to all patients to prevent this. It was decided not to do radiation, I forgot to ask why... I will save that question for next Wednesday. (or just leave well enough alone) COH is a first class operation and I feel very lucky to be having my transplant done there and as an added bonus it is close to home. I am ready and actually looking forward to going in and putting this all behind me. Thanks everyone for your help and support!

[Vera W]

Hi Rob, Thank-you for your private e-mail. I thought I would add a comment here since I am here now! I am so confused about this radiation issue. My transplant doc said they would give me the strongest that they have both radiation and chemo due to my age and good health. I am 12 years older then you, do you think it has to due with the fact that I have a more aggressive dX?
I really wish that I didn't have to have radiation. I am worried about other cancers but I guess that is not being my positive self! Sooo much to ponder! After all theses years I found out that I am O- today! Did they have you take the CMT test for the mono-herpes virus? It is suppose to have an effect on the HVS outcome? I had my periodontal teeth cleaning today. I picked a good day my WBC was 8 and 55% neutrophils. Last week 3.3 and 33%. The Vidaza does something but I won't hold my breath. Stay Strong! Vera

[Robsocal]

Hi Vera,

Too funny, I was at Loma Linda today getting my teeth and gums checked for anything that may pose a problem during my transplant. My dentist said everything looks great. I am 43 and STILL don't have a single cavity. I guess it runs in my family as my dad is 84 and mom is 70ish (won't reveal her age...) and they both have all their teeth.

I got a call from COH today (every time I see that # on caller ID I have a mild heart attack before taking the call) and they want me to repeat the breathing tests and my ECG. Don't know why because the results from the first tests were excellent. No big deal, these are easy. At least they didn't ask for another BMB

I will be sure to ask my dr. this Wednesday why he decided not to do the radiation and get back with you on that. Everyone have a good weekend and take care.

[Robsocal]

Another long day behind me... COH for bloodwork and "final physical." I am good to go for Monday and will check in at 9am. Results of last BMB show nothing has changed except for one more damaged chromosome. Blasts are still 4%. Also had me take a comprehension and dexterity test, about 2 hours! They are doing a study to see if chemotherapy affects brain function.

Vera, I asked my doctor why they are not using radiation on me and he said he didn't feel it was necessary since my disease hasn't progressed to the point where my bones have any small tumors or cysts, things that radiation would be effective in removing. But not to worry, I will be getting PLENTY of chemo to remove those nasty cancer cells!

I am very much looking forward to getting this taken care of.

[Vera W]

Well soon the wait will be over for you.I have an appointment with my hematologist at 11:45 and in Sacramento with the transplant Doc at 2:00. I feel like I am going to throw up but it helps to know that I am not alone in this, Forgive me for complaining Rob I have never spent a day in the hospital in my life! I will know more after today. I will write you again before Monday. Please take it eazy!

[Vera W]

Hi Rob, our power and internet is on and off due to the snow and we are suppose to really get hit tomorrow so I want to get this off now just in case. Please let me hear of your progress as soon as you feel up to it.
I feel a lot better about everything today. the Dr told me that he was not going to use radiation. I think Ruth's story scared me a little (God bless you Ruth you are a real warrior) but I wanted to know about everything and plan on telling my story to help others know what to expect! I have two potential matches a 25 yo man and a 30 yo woman. I looked around the cancer center as best as I could and it seemed fine I just couldn't see a lot of it. But it felt good. I guess they have rooms for family members to rent for $20 a night but the Doc said most people sleep on a cot in the same room. I am anxious to see how that will work out! You have Many Many good years ahead of you! Take care. Vera

[Kidgee]

I just read this fabulous thread and am now anxiously awaiting an update! I sincerely hope that all went well!

[Vera W]

Rob has been sending me e-mails.He can read Marrow forums but he hasn't been able to Post. You can send him a regular E-mail, he has it listed.. My transplant is scheduled for April 10TH Good Friday. Rob is a wealth of information for me and a joy to talk to! Please let him know that you are supporting him! Take care,Vera

[Robsocal]

Hi it's Rob! (actually it's his sister writing for him because he's feeling ill)

He wants everyone to know that the computer tech has fixed the problem and he's back on line. He is able to post on Marrowforums again.

Rob is on post-transplant chemo and has mild mouth sores. He's still eating, and sounds robust. His color is excellent. No chemo tomorrow. Rob's oncologist came in this morning and said Rob is "boring", which is great. The nurses are amazed that Rob never calls them - he's doing better than most at this stage.

Rob is grateful for all of the emails and well-wishes from his new friends at marrowforums. He told me he's met a lot of really neat people. Thank you so much for being so kind to my brother!

Vera, thanks so much for keeping everyone informed!