Robin,

I too was sorry to hear about your Dad's suffering and am disappointed that all of this came to pass. He is making the right decision right now and I am glad that the family has not only rallied behind him, but has been included in the decision-making process. I would likely make the same decision if faced with such a situation. I pray for all of you, especially your Dad, and hope that he will be up to a good stir fry dinner in the very near future.

Love to all of you,

Cliff

Robin,

My entire heart is with you, your dad and your family. I am happy to hear the tube will be withdrawn and he will be able to have some comfort. We are all here for you and as the dust settles one never knows how the human body responds.

Ed

Well, having had a few days of being able to work through some of the upset and worry over the recent turn of events, I am not feeling so fragile anymore that I can't give an update, lol! I realize that one of the things that I worry about when the board is "slow" or when some of the frequent posters are MIA for a bit is that people might be struggling with stuff - be it medical or emotional. I definitely post less when the stress is greater.

Dad is home now, and but for the chemo - induced crummy feelings, occasional vertigo, and significant fatigue, he is doing much better. His most recent bowel obstruction appears to have resolved, and his spirits are much better now for having made the choice that in his heart of hearts, was the one he'd wanted to make all along. He will return to Dana Farber this week for a check that all is going as it should as far as his response to the chemo goes, and to do blood work, in general. He will also have a conversation with his doctor about what the options are for a person in his situation (nearing 70, in remission, and electing NOT to do the SCT.) We understand that the goal for his care has shifted away from the hope of "cure", and is instead concerned with keeping him in remission and his quality of life good for as long as possible.

It is a very strange thing to have the paradigm "shift" in this way. I'd been so anxious about what he might experience by way of complications as a result of SCT, that to deal with that I'd been reminding myself that the alternative was worse. Now that we are in a different place, I am worried instead about what that other outcome looks like, or when it might come. I wonder how others of you, patients and caregivers alike, cope with the worry about how or when relapse will come?

Re: the impact of his gut issues for GVHD: scans reveal three distinct "kinks" in the small bowel. In some places, the walls of his colon have become thickened, while in other places, they are much thinner than you'd want to see. While in the midst of his conditioning chemo to prep for the scheduled SCT, a CT scan showed that he'd developed edema of the mesentery. I don't think that the issue is so much one of his gut condition (adhesions) making it more likely that he'd suffer from gut gvhd as much as it is a concern that were he to have an obstruction in the midst of recovery from SCT, which is pretty much inevitable, given that he has had intermittent bowel obstructions for 40 years now (yikes), the immunosuppressant drugs associated with SCT would mean that there would be very few options with which to deal with it. Simply put, he is more terrified that he might die with a perforated bowel than he is by the prospect of being overcome by leukemia. He is at peace with his decision, and we are hoping to get there, too.

He is keeping himself busy and hopeful by doing lots of on-line research into a family trip to Germany and Austria. We have no idea as to whether or when a trip of this kind might be feasible from a medical standpoint, but I am grateful that he is no longer despondent in the way that he had been, and that he is looking ahead to living as well and as fully as he can. Thanks to everybody for the continued support - I will continue with updates, even if it is from the perspective of the "road not taken."

Robin

Robin

I'm glad you are feeling a little better about it all. I think you need to take the SCT out of the picture completely - it isn't an option anymore so try not to dwell on what could have been. The fact your Dad is in remission is something some patients don't achieve so look at your Dad having a quality of life to enjoy the remission. Life is full of the unknown and in a way we are fortunate to see that the reality of our mortality and make the best life we can live. It is a new normal after remission whether by chemo only or transplant the fears are still there. Try not to let your worry if the future spoil the enjoyment of today (I tell myself this regularly).

I'm assuming if your Dad is home that his blood counts are ok? It is good his spirits are better without the bowel issue. Keep us updated on his progress.

Nicole x

Hi, Nicole -

Thanks so much for your kindness. Yes, Dad's blood counts are good since last check a few days ago - he is meeting with doc at Dana Farber tomorrow for conversation about next steps. He is definitely still working through this chemo, but not experiencing anything out of the ordinary on that front. He is wiped out, but still enjoying being with my mom, scrabble, their meals together, and feeling well enough to enjoy brief walks around their neighborhood on Cape Cod.

He is not doing any second guessing about his decision (that I'm aware of!), and I have to say that knowing that he is feeling relaxed and at peace with where things are now makes it somehow easier to come to terms with stuff. It was very difficult to see him feel such emotional anguish and be in such physical distress at the same time as he prepared for SCT. It has brought us all such relief to see both of those things be alleviated to the degree that they are now. That mind-body connection is such a powerful thing, and whether it is a coincidence or not, I don't know, but it sure is nice to see him doing so much better on both fronts!

Thank you again for your thoughts, Nicole - I hope you are enjoying great health these days!

Robin

Robin,
I am glad your dad is home and doing some research for a family trip. The unknown is so hard. I am still in treatment for relapse after a bone marrow transplant, boy that was a blindside. Taking things day by day, and I think that is best thing to do, it is all in God's hands. You all are in my prayers.

Take Care,
Suzanne

Suzanne -

I don't know that I was aware that you suffered a relapse - I am deeply sorry to know that, and send you healing thoughts and prayers for your return to remission and good health, God, this disease is awful.

Robin

Robin,
Thank you, and I agree with you that this disease is awful. My transplant was in Jan 2013, I had a clean biopsy 28 days after, but my day 84 biopsy showed a change in my Cytogenics. My biopsy showed 97% donor cells, 3% my own. My own cells were showing the same chromosonal mutation I had at diagnosis, I guess they were just shouting "I got to be ME". So I am in in hemotological remission but my chromosones are misbehaving. So they are trying low dose chemo with Vidaza and tapering off my immunosuppresants. They will recheck my bone marrow in 3 months. Praying that the treatment works, and trying to live each day that God has given me. I had a beautiful walk in the sunshine today, and lunch with my mom and daughter, a delightful day. One thing AML has taught me is to never take things for granted and cherish each day with your loved ones.
Take Care,
Suzanne

Suzanne,
I was so sorry to read of your recent relapse. I am keeping you in my daily prayers.

Robin,
I am pleased that your dad is at peace with his decision not to proceed with his SCT. I just want to offer a few words of encouragement. My husband is the same age as your dad and at our last visit, our doctor told David that patients his age with his complex genetics do not generally reach remission. I don't know what your dad's genetics are, but the fact that he reached remission is a positive sign. I also think that you should look to another Dave, who posts often on this site. Dave is chemo only, opted not to have a SCT, and is 3 plus years in remission. I'm sure that he will at some point adresses your dad's situation.

Your dad is fortunate to be surrounded by such a loving and supportive family (and a daughter who expresses herself in writing so beautifully!). I wish you and your dad all the best.

Myra

Suzanne, You are such a warrior! You just keep fighting this beast back. Hold on to the hope of a cure.

Robin, That is wonderful that your Dad is in remission and his cell counts are good. One just never knows about life. He just may stay in remission. I have been in remission for a year now with out a transplant. I am 61 and counting. I hope the trip he is planning becomes a reality. I was amazed to be alive and able to go to my granddaughter's high school graduation last weekend. Each day is a blessing for any of us. And much more so for those that are living with a life threatening illness.

lily

So Dad was able to meet with both the transplant doctor and his primary oncologist at Dana Farber yesterday. The transplant doctor's role was to essentially hand Dad's care back to the onc after having checked that he was working his way through the chemo and prophylactic antibiotics (all of which had been administered as part of prep for SCT that never happened) in the way that you'd expect. Dad is neutropenic now, and he required platelets for the first time in quite a while as his numbers on that front were very low. The doctors note that his counts are lower than they'd like for them to be at this point, but explained that it is not that unusual to take longer to recover from chemo with each successive round (this would be his third, as he achieved CR with induction round).

My Dad is VERY discouraged that he is not recovering from this round as well or as quickly as he did the first time, and I know is now worried about relapse in a way that wasn't when he was feeling better, both physically and psychologically. His doctors tell him that he remains in remission, however. I am hoping (desperately!) that indeed the reason for his counts to be as low as they are and for him to be feeling as poorly as he does is a function of the cumulative effects of the chemo itself. Looks like we have traded one set of worries (gvhd) for another (relapse).

The oncologist indicated that his treatment for AML is complete at this point - and that they would only do something further if/when he relapses. She did mention that decitabine might be the approach if that were to be the situation.

Both doctors agreed that provided his counts are stable, there is no reason why he shouldn't go ahead with his Germany-Austria-Italy trip this September. I am glad to hear that this might in fact happen after all - but am reluctant to see him invest too much emotionally in this plan, lest the rug be pulled out from under him down the road. :(

Now that a little time has passed since the SCT prep ordeal, I am understanding better that what felt like a "choice" on my Dad's part, in a way, really wasn't. The edema of the messentery (sp?) that he experienced, along with a full bowel obstruction were the medical factors that brought things to a halt. His transplant doctor consulted very closely with the GI and surgical folks, and they were in agreement that he was in no shape to proceed. It just so happened that their medical opinion aligned with my Dad's own worries about what was ahead. In that sense, the decision was, in fact, out of our hands.

What I hope we will be able to work through now is how NOT to spend too much of our time and emotional energy fixated on the possibility of relapse. What I'd love to see happen is that mom and dad enjoy their time together as they always have (sweethearts since they were 15 and looking ahead to a 50th wedding anniversary in 2016!), be with us and their five grandkids as much as they like, and come to feel at peace with the uncertainty of what's ahead - particularly as what's ahead for every one of us, after all, is uncertain! I am poring over these threads (again!) for insight and experience on that front, and remain so grateful that so many have been generous in sharing the good, bad, and ugly of their experience here. It is just such an invaluable resource!

Thinking of you all.

Robin

Robin i think its great the support you are giving your father. Its normal to recover slower after each round of chemo. I hope your dad understands it takes a toll on the body each time chemo is given.
I had the same worries as well until i understood the process. As far as relapse thats a worry with all cancer patients and like my doctor told me get out and enjoy life and if it relapses we will deal with it. Everyones situation is different and all we can dobis ask for Gods blessing and enjoy everyday...

Thanks so much for offering your perspective, Phil - it really helps. You are absolutely right to point out that his/our worry is the very same as that of anyone else that has dealt with a cancer diagnosis of this sort. I am sure that this phase, too, will get easier to cope with over time.

All the best to you, and thank you again for your kindness.

Robin

Robin,
I get it. I sooooo get it! I can never seem to give myself a break. I feel like I need to keep fighting the beast. I don't currently have active leukemia, but a test showed that I was high risk relapse, so I take inhibitors and was given Decitabine. It took 5 weeks for my counts to begin coming back- by far the longest for any of my treatments including transplant. I almost had a nervous breakdown, and for what? I sprung back just like everyone told me. My research doc said stop looking at the numbers and pay attention to how you feel-pretty sure Cliff has advised the same? How wonderful it would be if I could look into that crystal ball, but none of us can.
I decided tonight to celebrate one year of fighting AML. I reflected on everything and everyone who has made an impact on my recovery. I am still moving forward.
Your dad is lucky to have such wonderful support. I certainly hope he feels well enough to go on that fabulous vacation. I know, having missed my vacation last year, that I am anxiously awaiting my week at the beach in a beachfront home (can't go onto beach). I also want to get to Rome as soon as I can.
I am simply uploading a photo today- a bracelet given to me that says survivor. I hope your dad begins to see himself in that light.
Peace, love and hope,
Andrea

Robin

After relapse I was hesitant to make plans for fear if not being able to go but you know what - living like that is not really living. I ended up booking to go to Europe and came down with a virus that sent my blood counts downwards but my docs were confident it was viral and I was not Neutropenic and they knew how important this holiday was so I went, saw a dr over there to confirm bloods were recovering and had 4 amazing weeks with my family. So encourage your Dad to do this if he is well enough because the I think the benefits outweigh the negatives. Fear of relapse is something very familiar to me, I relapsed in breast cancer then got aml then relapsed from that then got a chloroma after transplant which is considered a form of relapse even though my marrow is clear. But you know what I'm still here, raising my kids and trying to enjoy life. I did need some counselling help though to get through life after relapse so maybe that is something your Dad might consider or even yourself, the hospital or Drs may have info on it. I wished I had asked for help earlier as it did make me feel better.

After my relapse it took 6 weeks after chemo for my white cells to recover, the dr was starting to worry but they did come back very slowly and were all normal 6 weeks after that when I went into transplant. So be patient as I'm sure they will recover.

Nicole