Countdown!

[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!!!:)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

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]

Originally Posted by Robsocal

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.