I don't know about how Myra and David are doing, but I am, as a 68 year old about to have a transplant, very very happy to hear about your David. I am certainly not up to nine holes of golf and, never having played golf in my life probably never will be, but I would love to have that degree of energy again and celebrate the fact that he does!

Shoshone

Robin, I am thrilled for your Dad. The way to go. I also have been wondering about Myra and David, but have been hesitant to ask I am glad you did.

Shoshone...your road to good health awaits you. We will be behind you every step of the way before, during and after your transplant.

Cliff

Robin,
You warmed my soul when I read your post. How thoughtful of you to think of David and me. I have not posted in a while because aside from caring for David, our granddaughter is in the PICU (same hospital as David) with a bowel obstruction. She has Rett Syndrome, a neurological disorder which brings with it a host of serious complications. When a crisis such as this arises, David is generally the one to rally the troops; the one whom everyone leans on. It is particularly difficult for him to see everyone around him scrambling and he is on the sidelines unable to help.

Aside from this family issue, David is doing quite well post transplant which I hope will be encouraging news for both your dad and Shoshone since they are contemporaries. He had a stem cell transplant from an unrelated donor on August 6. This was preceeded by 5 days of reduced intensity chemo. The transplant itself was quite an emotional experience for us.

There were 7 transplants in a three day period in our bone marrow transplant unit. In the days that followed, the nurses told us that all of the other transplant patients were extremely sick. We kept on waiting for the "other shoe to drop" - but it never happened. David sailed through the days that followed and was discharged on day +14. The doctor explained that it was due to the reduced conditioning treatment and the fact that David had remained in remission since late March. He did say, however, that if he needed a stronger chemo, he would have administered it.

Right now, he is day +37. He has been fatigued, lost some additional weight, and has some body aches, but other than that, he has no other complaints. His appetite is not as voracious as in the past but he tries to eat three meals a day. We go to the hospital twice a week for magnesium infusions and blood work. At first his counts fluctuated, but they have now been stable for the past 2 weeks. The doctor changed some meds and that seems to have stabilized things for now.

I know that Ed and Julie are at the same point in their 100 day journey. I would love to compare notes and see how you are doing. I have often read through Andrea, Phil, Suzanne and Trish's post transplant journey on Team Transplant 2013 to see how they fared in comparison to David. It has been extremely helpful to read that others have had the same ailments.

Finally, I will never be able to adequately thank Cliff, who, along with Dave and Ed were the first individuals to lend me the support that I needed to make it through those first few harrowing months and some very dark days. I will always be eternally grateful.

Myra

SO happy to hear about David. Ive been away for too long, but Im back and eager to find out about everyone.

I hope David will keep up surfing !

Love U all

Ana Maria

Thank you Myra for that very encouraging report! It does sound like David and I are on a similar trajectory, but I am about five weeks behind! I too have been in remission since March and will have a reduced intensity chemo, and they are constantly fiddling with my magnesium! If I can make it through without that other shoe dropping I will be thrilled. Of course as the doctors eternally are saying, "everyone is different," but how wonderful that he is doing so well! It's no doubt in part a tribute to your care. I am sorry to hear about your granddaughter, but it sounds like you all have things under control. Wouldn't we all love to have just a tad less to do with hospitals!

My best thoughts are with you.
Shoshone

Well,
This post made my night.
Obie, so happy to hear things are ,owing forward.
Shoshone, you are going to be on this journey with us in terms of transplant and I am so glad you continue to offer support to the rest of us.
Myra, so sorry to hear about your granddaughter and I will pray for her.
I am happy to hear about David"s progress. I did the magnesium infusions at home every day for about 8 weeks. It felt like forever. I still take the mag +protein ills now, but that's a far cry from where I was. I was taking pills and infusing, we just couldn't seem to get a handle, but it all worked out, now I am deficient in Vitamin D and calcium, it figures. This is why I constantly ask to be outside. I need my Vitamin D naturally, but that darn radiation precluded me from worshipping even mildly, so pills it is.

Thanks for the updates here all.
Peace and hope,
Andrea

Sorry Robin, it should read,
Robin, happy to hear things are moving forward with your dad. I have to do so etching about this small print late at night.
Andrea

Myra,

Short post, because I am with my daughter, being pampered. I just wanted to tell you that I am so happy to hear that David is doing well. You don't have to post daily (although I love your posts) but please keep us informed about his progress. Don't forget that when others do well, we do well, and above all, we are reassured that we are all on the right track, that having to navigate speed bumps, and that good and less good days are part of the script. If you saw my smile right now, you would understand how relieved I am. Love you both.

Cliff

Thank you Andrea. I rely on you more than you can know!
Myra, what Cliff says: "when others do well, we do well." It is so true. I thrive on encouraging news, of course, but it also is important to hear the hard things and to know that people get through them to the other side. The value of this discussion place cannot be overstated for any of us at any stage of this evil disease.
My best,
Shoshone

Myra -

It is so wonderful to know that David is doing so well! I know how great your anxiety was in anticipation of his transplant - what amazing relief you must be feeling now! Thanks so much for the update - we will continue to keep you and David in our thoughts and prayers. I am very sorry to learn of your granddaughter's condition - I pray that the obstruction will resolve asap and that she will return to good health again very soon.

Wishing everybody peace and comfort today, and always.

Robin

Shoshone,

I have been following your story with interest, as you and my Dad are so close in age. I do hope that the news of how well Myra's husband is doing is very encouraging to you! My dad didn't end up proceeding with the SCT, as in the midst of the conditioning chemo he suffered a bowel obstruction himself, along with a few other complications. I don't know that he'd be willing to go down that road again, but I will certainly share Myra's happy news with him, as he might find it very reassuring, too.

Cliff, thank you, always, for your kindness and for sharing in our relief that things have finally stabilized a bit for my dad. Today his oncologist told him that it is no longer necessary for him to travel to Boston each week for bloodwork, etc. He had been doing bloodwork 2x per week - once on the Cape and once in town at Dana Farber. She is recommending that he have blood checked just once per week now, and that a visit to DF will only be necessary every other week. That drive has become a real drag for my parents, so it will make a very positive difference in their quality of life that they can cut it back a bit!

Andrea - you are so great to be so positive and generous in your support of everyone here. I know that patients and caregivers alike draw strength from your great example every time they com here. Thank you.

Shimauta - so glad you that you continue to do so well! What a nice thing it is to come here and see so many familiar names, along with those of newbies.

Robin

69 year old father dx with AML in January / '13- in remission since induction round in February of '13 (chemo only)

Myra,

I am day 53 today and currently in the hospital getting MAGNESIUM IV presently. lol. I am doing well. I had the exact same issues as David. Fatigue, loss of weight, taste changes etc. I was taking Micafungen at home IV 3 times a week and eventually my hickman triple lumen catheter gve me a coag negative staph infection. They removed it and now have me in hospital for observation for at least two more days. I have HORRIBLE sinusitis. I love comparing stories and I know Jimmy is 60 days pst transplant now. We can all share our bumps along the road.

I too had reduced intensity but had a rough time with mucositis and throat pain from the anti rejection drugs. We have quite a formidable team transplant - new and old and we love the chemo only survivors!! I cheer for them as I cheer for us.

My love goes to your granddaughter. Honestly the only thing that makes me breakdown in tears is seeing children at sloan suffering. It breaks my heart entirely.

with love,
Ed

Ed,
What have your counts been lately? We go to the hospital twice a week and it seems that David's WBC and platelets are slowly dropping. The doctor changed his meds - he no longer takes dapsone and is now on a monthly inhaled antibiotic. He thought that this may help improve the counts. Today his WBC was 3.3, down from 6 and his platelets are now 135. I know that they are still in the normal range but the fact that they are slowly dropping is of concern. The doctor says that fluctuations post transplant are not unusual.

If anyone else post transplant can comment, I would appreciate it.

Many thanks.
Myra

Myra,

Do not worry. My platelets bounced around early post-transplant and even 3 months after discharge, my ANC required weekly nulasta or neupogen to keep the number in a safe range. It goes with the territory. The bone marrow is getting used to its new environment (yes, that is no joke -- the interaction between the bone marrow matrix and the cells is something that takes time to stabilize). DO NOT WORRY.

Cliff

Eddie, I am so sorry you are back in the hospital, but it sounds like a potentially short visit. What IS it with this magnesium? Mine is always low, but if I take it every day I get diarrhea, so they say to hold it back if that happens. When I get to the hospital for whatever reason, they almost always put me on mag IV. Sigh. I hope you feel better and get back out soon!

Shoshone