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/fall2008/ACBSCT/Files/Handouts/MDS%20Position%20Statement%20N31.doc

http://bloodjournal.hematologylibrary.org/cgi/content/full/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. :eek: 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:p) 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:rolleyes:

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!

[Ruth Cuadra]

Thanks for the update, Rob's sister. "Boring" is a great accolade from the doctors, so that tells me Rob is doing well. Please let him know we are thinking about him and wishing him smooth sailing ahead.

Regards,
Ruth

[Robsocal]

Hi all! I am enjoying my daily 1 hr disconnect from my IV's and thought I would send an update. I am on day +3, with no major problems so far. My throat is starting to close off and mouth sores are pretty uncomfortable as you can imagine. They will be hooking up a morphine button later today which should help, the downside being morphine tends to make me feel loopy, so I will be using it sparingly. My Drs. tell me gold stars are not handed out here for suffering needlessly, so take the meds! I am still eating soft foods and that is good. Everyone here is happy with my progress so far. I am in confinement and tend to get a little stir crazy. I look forward to walking out of here whole and healthy. I will receive another dose of chemo today and am not looking forward to that, but as time goes on will get less and less. I am receiving blood and platelets about every other day.

I would like to thank Neil for his donation of blood in my name. Much appreciated! Take care everyone.

Cheers, Rob

[paul36]

Hi Rob,

Great to here that you are doing well. I have been thinking of you often, and keeping you in my prayers... I am still in the trying to find out what is going on stage. My BMB came back non diagnostic, but I tested off the charts for epstein bar/Mono which I am told can cause havoc on your body as an adult. I am still getting more test done, but I am feeling well, and enjoying life to the fullest.. My hemo says that as long as my counts don't get any lower, we will just check on everything every few months to make sure I stay stable, or to see if things improve. I am just so happy that you got your transpalnt, and are feeling fairly well. I am sure that you will continue to get stronger with each passing day, and will be back to your old self in no time... Please keep me posted, and good luck with the recovery... Again, just know that you are beeing prayed for, and that god will see you through this..

God blesss you my friend.

Paul

[Vera W]

I want to again write on Rob's behalf so that all of you are aware of what is going on. I haven't heard from him since Friday and I feel like he is on the dark side of the moon! His sister has been writing on a blog she set up. This week end his mouth and throat was bad and he was on morphine. He just wanted to sleep. Monday night his temperature was 104. They were able to bring it down but he has a lot of mucus and cough. He is being tested for pneumonia. Please continue to remember him in your thoughts and prayers. His Spirit has become a real inspiration to me and he has helped me get past my fears which I face every day. I can't imagine how miserable he must be feeling. I was able to do all of my pre-tests yesterday and I started hopefully my last round of vidaza today. I finished my day yesterday with another BMB (I only screamed Twice which only 2 small bad words!!!::rolleyes::rolleyes::rolleyes:)I am being admitted April 2nd, day-8. My SCT is still April 10 TH.I am on my own countdown! Get better rob!:) You are young and strong!!!

[Beth I]

Thanks so much for the update, Vera. I wish he weren't having trouble, but he's a strong, positive guy and will pull through with flying colors, I'm sure. No longer "boring" though. Is the blog Rob's sister is doing public?

Please continue to keep us posted!

Beth

[Birgitta-A]

Hi Beth,
Here is the adress to the blog: http://weloveourboyrob.blogspot.com/ I follow it every day and hope Rob soon will feel better!
Kind regards
Birgitta-A

[Beth I]

Thanks so much Birgitta!

Beth

[Vera W]

I was in a hurry this morning and was on my way to posting Rob's blog and I see Birgitta beat me to it. Thanks! He sounds like he is hanging tough. I started my day with my Vidaza shot, Had my psych evaluation in Sacramento and a tour of the transplant wing, very interesting only 6 rooms. I should get some great care! It was funny to hear them explain to me everything that has been happening to Rob..Worst sore throat of your life, mouth sores, feeling really bad after about 5 days,,Watch out for infection!! WE WILL PERSEVERE!!!
Best to all and to Rob get better!! Vera

[Robsocal]

Hi Folks! It's finally me. I've been through hell the last week and a half or so, but things are finally improving. 980 million cells were donated in total. It was decided to use 500 M and bank the rest just in case. Pretty much all the classic side effects, puking, terrible mouth sores that spread to my gut, a little dementia, fever up to 104, rash, well you get the picture. The last 4 nights were the lowest of the low. However, at all times I tried to think happy thoughts and of my many blessings and how fortunate I am to be here at Hope getting this taken care of. I know in the end I will consider this a positive event in my life. I've rekindled friendships from many years ago and am really looking forward to the future.

The staff here are wonderful, every last one of them. They are on top of everything at all times, it's just amazing how safe you feel. The nurses only take care of two patients per shift, can you imagine?

The good news came this morning. I am grafting! My numbers came WAY up yesterday, the latest being:WBC .8 RBC 3.33 HGB 10.1 HCT 29.5% PLT 91.
If my WBC comes up .2 then I can leave my room!! My Dr. said this is wonderful news and I am progressing beautifully. Usually signs of engrafting aren't seen till about 2-3 weeks. I should also start feeling a lot better in the next few days.

The next step will be to monitor GVHD of course. Lets keep that evil monster away! Thanks for all the well wishes, cards and most of all your continued prayer. I am not quite out of this mess yet but things couldn't be going better.

Cheers,

Rob

[Beth I]

Amazing news, Rob! Sorry you're having to go through such a tough time to get to the up-side, but it looks like it has totally been worth it. Thanks for staying in touch and letting us know how you're doing.

Best wishes,

Beth I

[Robsocal]

Hi everyone, things are going just great here. I continue to feel better and grow stronger every day. I am sleeping well and eating small cups of soup and mashed potatoes. Still some bowel issues but making improvements there also. Skin is still itchy and rashy. I am exercising (20 minutes on treadmill yesterday) and everyone here is thrilled and amazed at my quick recovery. My Dr. says he is merely babysitting me and letting my body do its thing. I haven't needed blood or platelets for three days now.

My ANC is: 6.6, WBC: 10, RBC: 3.43, PLT 62. Almost all other counts are either in the normal range or just outside:D

Tomorrow I have another CAT scan scheduled to follow up on the pneumonia issue. Meanwhile they aren't bothering me too much so I have plenty of time for reading, catching up on the computer and doing... absolutely nothing!

[Ruth Cuadra]

Hi, Rob.

How great to hear you're doing so well! Thanks for the update. You've given a lot of other patients tremendous hope.

Best regards,
Ruth

[Robsocal]

Having a good day as my over-all condition continues to improve. Mouth is better still, the main issues being dry, cracked lips and tongue. Rashes are improving with each day but it's still quite often difficult to get comfortable. Strength wise I feel great, drs are having me back off the exercise a bit as they feel I am over doing a little. I am reminded that my immune system is in its infancy.

2nd CAT scan is still showing possible problems with pneumonia as well as some sort of scar on one of my lungs. They are going to send in a probe tomorrow to see what is going on there. Lungs and breathing seem to be fine, but have to be sure. I believe I will receive a colonoscopy also tomorrow to address the gut issue as it is not improving.

Eating is a challenge and at the moment it's only a BOOST drink in the morning and chicken broth in the afternoon. Everything else sends me sprinting to the bathroom. They are still encouraging me to eat and only have my nutrition drip on at night. I will try whipped potatoes again this evening.

#'s continue to look good and I am looking forward to getting a much clearer picture tomorrow.

[Robsocal]

Colonoscopy shows definite GVH. I am TRYING to eat but is is so hard. I feel incredibly weak all the time, its an effort to do most anything, but I try. Still have the gut problems, drs are working on it and I hope to get some relief soon. Everything else is OK for the most part. Thanks again for all the e-mails and words of encouragement. I cant answer but LOVE hearing from you!

[PH Steele]

Rob, so sorry that you are feeling weak. I hope it is soon better. I have been reading your posts. I know a young man of 20 who will be walking in your shoes soon. Thoughts and prayers are with you on this journey to recovery.

[Robsocal]

Can't believe its already been a month since my transplant. Tomorrow another BMB to see how everything is going. My numbers are very good, WBC 10, RBC 2.68, HGB 8.8, PLT 104, so drs are confident I have grafted. Meanwhile I am still battling GVH, still on liquid and still have the gut issues. If this doesn't improve in the next few days the next step is to try a drug that is effective at curing GVH but at a cost; its very hard on my system and will probably make me quite ill again and knock my numbers down. Also will leave me subject to infection which would be a whole new mess to contend with. Really want to avoid if possible!

On the bright side, I feel really well in general, am exercising and trying to stay as active as possible. Several patients are leaving this week, wish I was one of them!

[Ruth Cuadra]

Wow, Rob, those are great counts! Sorry the gut issues are still such a problem. It might be helpful for others to know what drug the doctors are suggesting for stamping out the gvh. Would you mind sharing it?

Day +30 is an important milestone. Savor the victory. You'll be out the door soon, I'm sure.

Best,
Ruth

[Birgitta-A]

Hi Rob,
Wonderful news about the counts ;)! Hope you will manage to defeat the GVH reaction!
Kind regards
Birgitta-A

[Robsocal]

Thanks Ruth - its official, I start on DACLIZUMAB tonight. Anyone know anything about this drug? Hopefully it will do the trick. Finished up with BMB about an hour ago, it was fine. I am always remided how strong my bones are as I hear the doctor grunting away! Will get results Tuesday morning and pass them on. They will be good, I just know it, but it will be a nervous weekend nonetheless!

Cheers, Rob

[debbie2008]

rob -- i don't think i've stopped praying for you since i have read your posts. your outlook is so inspiring and you deserve a disease-free life after this painful and exhaustive experience. i truly hope that God keeps you in his arms as you continue your journey. i know you will overcome any obstacle...your strength is phenomenal and your smile is contagious. i have followed the posts on caringbridge and await the outcome we all want.

we need you to become victorious against this horrendous disease. you certainly deserve it.

[Birgitta-A]

Hi Rob,
As far as I understand after looking at Daclizumab patients receiving daclizumab for steroid-refractory acute GVHD have high rates of infections but the underlying disease and its prior therapies carry an risk for infectious complications, and very little of the infectious risk may be attributable to daclizumab itself.

Your good performance status before the SCT will hopefully help you through this treatment!
Kind regards
Birgitta-A

[Robsocal]

Thanks for the info Birgitta-A! You are always on the spot with the latest. I have received two doses and so far so good. It did drive my counts down as promised and I needed my first blood transfusion (RBC's) since the transplant. I think I need to thank Neil for the blood as it was donated to me. Thanks Neil!

The GVH continues, but there are signs of improvement each day. My rash is getting worse in some places but better in others as it works its way through my system. Gut problems are improving and I am back on limited soft food AGAIN! This is day two and NO problems so far, so I need to keep that going! Physically I feel good, and they are increasing the frequency and intensity of my exercise. I did a mile on the treadmill today and it was fine, so I am happy about that.

And now the good news... the BMB results are in and I am "clean" NO signs of MDS, NO damaged chromosomes, NO blasts and I am grafted!!! Now get me out of here!!!

[Birgitta-A]

Hi Rob,
Most of the news you report are very good :) - bone marrow without signs of MDS, less gut problems, rash better in some places and good physical status!
Hope the improvement will continue!
Kind regards
Birgitta-A

[Ruth Cuadra]

I am "clean"

Rob,

There is no better news! I can sympathsize with the "get me out of here" feelling. There comes a point where you really can't recover any more in the hospital. Being home is a tremendous mental boost. I'll bet that day is not far away for you.

Keep up the good work!
Ruth

[Robsocal]

Hello everyone - just wanted you to know I am feeling GREAT and improving each and every day. Dr's are cutting back on the steroids and some other meds as I continue to drive this GVHD out of my system. Rash is much improved and doesn't concern dr's at all at this point. And I am eating solid food now for the last three days, without problems - this is a HUGE step forward for me. My WBC #'s are very good and the risk of infection, while still present, is considered pretty low.

Hopefully I will be out of here in a couple of weeks and down to "Hope Village" where many transplant patients go during recovery. They are studio apartments where I will live for about a month or two till I am healthy enough to go HOME.

[Neil Cuadra]

How's the food there, Rob? Instead of going off to the cafeteria, I sometimes bought meals from the hospital food service that brought Ruth her meals. Actually, they merely offered to bring Ruth meals; she had no appetite until Day +24. After a while I learned what I liked and didn't like on their food service menu and what to order as the menu changed for different days of the week. But Ruth always liked the same thing best: popsicles!

[Robsocal]

That's hilarious about the popsickles! Room service got tired of bringing them up to the 6th floor here, so they stored something like 20 big sticks, italian ices,you name it. They have a pretty extensive menu now that pretty much covers everything,and yes, you learn what to order. On one of my first days here the nurse on duty said to stay away from the steak items and boy was she right! For the most part I must say they do a pretty good job, and the daily chef special is always good.

I just got word this morning that I am no longer on "low residue" diet and I can have pasta again! :p

[PH Steele]

I have not seen a post from Vera recently. Has she been able to get the location for her transplant changed? Is she in the hospital yet? Can anyone update me. Thanks so much
PH Steele.

[Robsocal]

Well sort of, I am out of the hospital after 56 days! It was decided I was good to go to my sister's house which is close enough to the hospital to satisfy my doctors, and I am thrilled to be here. You cant believe how nice it is to be free of all the IV's, etc. I can actually sleep at night without being awakened every 2 hours. I was released last Friday and my first follow-up was today (Monday.) Everything looking good except liver enzymes and glucose, so dr. added two new meds, bringing my total to about 30 pills a day, it's pretty staggering keeping track of them all. Some you take with food, others on empty stomach, and some interact with others and have to be taken separately... so I am pretty much popping pills all day long, at least for a while and they will gradually taper off. Still feeling great hoping my taste buds will kick in soon so I can start tasting my food again, should be anytime now, I hope so - need to gain back some of the 25 lbs I lost, I am way too thin. My numbers are on the rise again after dacluzimab treatment stopped & I am happy about that.

Vera is doing fine, I will tell her she needs to post an update!

Cheers, Rob

[Neil Cuadra]

Great news, Rob. How nice to get to enjoy some peace and quiet after 8 weeks of commotion! Even with the best of care, a hospital can never be as restful a place as home (even if it's your sister's home).

Getting your taste sensation back will definitely be a welcome improvement, so eating can become a pleasure instead of a chore. Taste is a sense we tend to take for granted until we're missing it.

You've certainly topped Ruth's records for pills per day. I can swallow pills one at a time with a sip of water, but Ruth learned to do 'em by the handful after picking out the right collection for each time of day. We learned what each pill was for so we could discuss with her doctor when Ruth would no longer need particular pills. It was a relief when we finally had to give our name at the pharmacy, instead of being there so often for refills that all of the employees knew us by sight! :)

[Robsocal]

Things are going well here after almost two weeks out of hospital. Still seeing doctors twice a week and progressing slowly but definitely improving. I feel fantastic and want to get out and do things but know that's impossible at the moment so I have to constrain myself! GVH is still a concern, seems like every time I see marked improvement, something new pops up, very frustrating. Anyway, I am not even a couple of months out yet & have to realize that I won't be "normal" for quite some time...

The grafting and my numbers are great, would be better if I didn't have to take all the steroids which drive blood counts down and weight is still dropping even though I am eating really well, (down to 156 lbs.) Also will be referred to eye specialist in a couple of weeks if improvement is not seen there. My eyes are very dry and blurry.

My #'s are:

WBC 6.4
RBC 3.27
HGB 11.6
PLT 91

Take care everyone!

[Robsocal]

I have received word from my doctors that I am doing so well that I no longer need someone with me at all times and I can go home whenever I wish! Saturday will be the big day. I only have to visit COH once a week now for blood draws and monitering. My drug load has been cut by about half and every time I meet with my doctor he is amazed at how quickly the GVH disappeared. I literally have no symptoms. Gut is perfect, no rash, glucose levels perfect and eyes back to normal. I am able to drive again & shop just like a normal person! Been to the movies and lots of long drives, it is wonderful. My taste buds are on the mend and food tastes better and better. I will find out Thursday if I can start eating raw veggies or if I need to wait till the 4th (100 days) I have a feeling they will say its fine, I am really craving a good salad!

My main focus once I get home will be regaining my strength and getting into shape again with my goal of being back to work by October. I am so glad I made the decision to do the transplant & get on with life without MDS. Toughest thing I've ever been through but worth it.

My thoughts and prayers are with our friends that are undergoing or are about to go in for transplant - keep plugging!:)

[Ruth Cuadra]

Three cheers for you, Rob! Hip hip hurray! Hip hip hurray! Hip hip hurray!

It's so great to hear that you're going home and that you seem to be in such good shape. I know exactly what you mean about that salad. I sat with my fork pointed at a bowl of lettuce on my 100th day and could wait to chow down.
Enjoy! You deserve it.

Regards,
Ruth

[debbie2008]

rob.... i have been rooting for you since day one. was worried when you didn't post. my prayers are with you and i am thrilled at how well you feel. please keep us updated. you are an inspiration........

[Vera W]

Once again I am writing on Robs behalf he has become a very dear friend to me. I wanted you all to know that they have put Rob in an induced coma and he has a fungal pneumonia, gvhd and severe diarrhea. His sister is asking that you continue your prayers for his healing.

[squirrellypoo]

oh no! Thanks for the update, Vera. I'll keep him in my thoughts.

[debbie2008]

this is such terrible news.

i pray that this will turn around and once again he will be restored to good health. he has been through so much and has done is all so graciously. he deserves the outcome we have all hoped for.

if every there was an example to follow during the uncertainty of this illness, he is it. his positive spin on every situation has given strength to so many of us.

my prayers are with him and his family. i can only imagine how difficult this is for all of them.

[PH Steele]

I am not able to get on Rob's blog tonight. I am very anxious to hear how he is doing. I hate this setback for him, and I have him very much on my mind and in my prayers. Does anyone have a new report?

[Birgitta-A]

Thank you for the update Vera - I lit a candle for Rob in the hospital church today.
Kind regards
Birgitta-A

[Beth I]

Thursday, June 25, 2009
A Good Report Today

Dr. Kim came into Rob's room this morning and said to Nonnie, "I need to talk to you." Nonnie requested that the conversation be held outside of Rob's room, as the nurses have told us that he can hear through his induced state of sleeping. Dr. Kim's reply was, "Even if it's good news?" She proceeded to tell mom that Rob is responding well to the treatment. They are going to test his other lung to see if there is fungus in it today. His artificially pumped oxygen has been reduced because he doesn't need it! They are considering gradually weaning him of the respirator and bringing him back to consciousness. Keep praying! Thank you for all the encouragement and love!!

[PH Steele]

I am so happy for this good report. I have been praying steadfastly for Rob's healing and for his family to have encouragement. Even though I do not really know Rob, I feel that I do from following the posts and blog. I can sense a man of strong spirit and strong faith. God has plans and a future for Rob!

[PH Steele]

I still cannot get on Rob's blog--computer problems! Has anyone read an update this weekend? I am so anxious to hear that Rob is continuing to improve.

PH Steele

[Vera W]

Rob is in an induced coma still. He is receiving wide spectrum antibiotics but it seems to be spreading. Please pray for him.

[PH Steele]

Still having problems getting on the blog. What is today's update on Rob? I woke in the middle of the night last night and said a prayer for him.

[Vera W]

Everything is still the same.

[PH Steele]

Vera, thank you for this update. I pray that you are hanging in there and not feeling too badly. Prayers are with you, friend.

[Vera W]

Rob is in dire shape, they have him on dialysis and it is helping but Robs sister Laura commented that they are surprised that he is still alive. Please bombard the heavens with your prayers and supplications. Rob was such a comfort to me. He wanted to beat this thing as do I. He wanted to be there for me. We have made pacts to meet and do something fantastic after we get well.

[PH Steele]

Vera, I am praying steadfastly for Rob and for you today as you get your transplant this evening. I hope that all goes very well for you. I feel that I know you and Rob.

[debbie2008]

vera..

thank you for the update. both you and rob are in my thoughts and prayers constantly. i am heartbroken to hear his present condition and i am fearful of the effect it is having on you. as we all know, everyone reacts differently to treatment. my prayers are that a miracle does happen and he recovers and that your new cells bring you the cure you deserve. we are all with you.


love and prayers......

[netsirk]

Rob went to be with our Lord at 2:30 today. His family was around him, praying with him, and loving him while he entered Heaven. It was very peaceful, and though we are heartstricken, our comfort is in knowing that Rob is pain-free and full of joy.

"Precious in the sight of the Lord is the death of His godly ones." Psalm 116:15

Jesus said to her, "I am the resurrection and the life; he who believes in Me shall live even if he dies." John 11:25

[Ruth Cuadra]

Thank you, netsirk, for sharing this news. I just came online to post the same information. I know that everyone here had a stake in Rob's recovery and we are all terribly saddened by this loss. To his family, I hope that you are comforted now by your memories of the healthy, happy Rob who was part of your lives for so long. To those who are now struggling with these diseases, I urge you to continue to fight. Rob fought a good fight and we owe him our efforts to keep that fight going.

My best to all,
Ruth Cuadra

[PH Steele]

I am so sad and so sorry to hear this. I had so hoped and prayed that Rob would regain his health. A little over a month ago, I mailed him a card. He wrote back thanking me for the encouragement. He said how much the communications with others had comforted him and encouraged him. I know this forum was important to him.

To his family, I know their loss is very difficult. It was obvious from his writing that Rob was a man of great strength, courage, and faith--a man who will be dearly missed. My thoughts and prayers are with them.

[squirrellypoo]

Oh I'm so sorry to hear he lost his battle, I was really willing him to pull through. It's not fair that someone so full of life should go as far as he did and still be taken away. I shall think of him and his family today.

[JEZ]

I have been on vacation and just read the news. I am so sorry to see that Rob's courageous journey ended this month. It breaks my heart. My prayers to his family and all those who were touched by his life.

JEZ

[Neil Cuadra]

For those who followed Rob's story:

Rob is mentioned a number of times in Vera's Transplant thread. PH Steele described a letter from Rob's sister, following his death, in this post.