What a roller coast ride this has been ...
my husband was diagnosed with MDS RAEB 2 in May 2010, started one of the prescribed drugs (Dacogen) unfortunately that did not slow the progression to acute myeloid leukemia. He then had induction chemo and a bone marrow transplant from his sister (in reality a stem cell transplant, T cell depleted) in October 2010 and has been doing well. No real GVHD, but complications from a reactivation of the Epstein Barr virus and subsequent treatments with Rituximab for EBV Lymphoma have played havoc with his WBC. We're still waiting for certain levels to return to a level where he can begin to receive the childhood vaccinatons, all wiped out with his immune system prior to transplant and then with the Rituximab.
So we wait and continue to watch the counts. Fingers crossed for the blood tests done today at Sloan, hoping they call in the next day or two for some vaccinations next week 
We have several new friends from the time we spent at the ACS Hope Lodge in NYC (required for to be close to to the hospital for 100 days post transplant) what a blessing it was to have that available, and we are thankful we had an insurance policy which allowed treatment from one of the premier cancer centers. We met others who did not have such access 
With AML and a bone marrow transplant there is not much time to shop around for the "best" transplant center as time is of the essence, we chose to stay closer to home because that is where we began ... and there was not much time to search for "the best." We spoke with the NIH as well, but as the doc at Fred Hutchinson in Seattle said in a phone consultation, Sloan Kettering is not "chopped liver" and the window of time might trump the medical facility and approach. So you go with the flow and are swept with the tide.
We're looking to sell our home, those out of the pocket annual maximums really hurt, stopped any renovations to get ready for the sale as the doc said that was one of the last things a bone marrow transplant could be around. Fortunately we have a family member that stepped up to the plate to help with financial matters, they live in a country with socialized medicine, and they said the most important thing is to focus on getting better, not medical bills. What a novel concept!
A short intro of where we have been and wishing all those on this roller coaster a good outcome. My Mom had cancer and I've had cancer as well, not a roller coaster that we choose, but we are on this ride together.
A Healthy New Year to All, takes on a whole new meaning when you have been there.
Step by step
= new reply since forum marked as read
to situations, some rally and others fade away. As my sis says it is a true measurement of those who are in your lifeboat and those whose are not. It is not meant to belittle people who do not step forward as sometimes they mean well, they might just be less assertive under different situations. But there are people who take charge under most conditions ... the people you want in 'your life boat.' We are so fortunate to have some people in that category. A friend of my sister's who lost her husband to lymphoma last year while waiting for a transplant said to me tonight 'you have the best sister' ... I could not agree more.
Thanks for acknowledging the unsung heroes, both family and friends, they mean so much on this journey. I'm so happy that your family has stepped up to help you during a difficult time.
All the best to you and everyone on this path, it is not easy, but family and friends make the path less daunting.
Hugs
and do help to put things in perspective as well.
We just need to keep moving and supporting each other.
Last edited Tue Jan 10, 2012, 08:36 PM - Edit history (1)
and this clip of Gene Wilder only has a small clip.
Gene Wilder Talks about Non-Hodgkins Lymphoma
What made me think of this tonight was speaking with someone in the local infusion suite today (hubby had an IVIG treatment, first locally) who was diagnosed with NHL and then remembering the pictures of Gene Wilder on the transplant floor of Sloan Kettering at an annual stem cell transplant celebration ... we went this year
Have to be over a year post transplant to be invited!
No word yet on revaccinations, CD4 went down slightly last week
but at least there was a CD19 count, both needed for revaccinations. Hopefully they'll test again soon, just have to get past this cold our college age son brought home for the holidays, but today's hemo level hit a new high post transplant and the WBC did not go down from last week. Very happy about this, but would like to see a reversal of trend!
Celebrate the good news when you can, feeling better today than late last week, best to all on this bumpy, bumpy road
just hoping you have a good insurance policy, people having to fight their insurance companies for tests their docs want is just an insult when they are already struggling. Try and stay determined, nobody can expect anyone to be positive all the time, one foot in front of the other
for vaccinations and in the meantime a nasty cold, brought home from our college age son over the holidays, and then something urologic that they are still investigating. The second antibiotic seems to be working, but still more tests to be done.
Some bumps for the New Year and hopefully that will be it! Looking forward to a better 2012 and to resume a more normal life - guess we're stuck with the jigsaw puzzles and avoiding crowded areas for the next month or so.
Wishing better days ahead for all
maybe some skin graft vs. host developing, then again a little is not so bad as it helps keeps the leukemia cells in check ... or so they say. Guess his sister's immune system and his better learn to get along
Funny thing, when he had the cystoscopy for the urology problem and I asked how it went, he said he would rather have a BMB. Having watched all his BMB's and having had cystocopy's myself I think he is crazy, then again he did not see that tool they use for BMB! Also he has been lucky to have experienced doctors doing the BMB's.
So fingers crossed for next week!
Seems all cancer survivors are always waiting on the next test and then the next result. But we all try and move forward with the "new normal."
Sorry to hear that the appointment with the surgeon was postponed, but glad to hear you are feeling a little better, a visit surely will do that!
Thanks for asking
all in the normal range
Now we wait for the results of the bone marrow biopsy, there is always the next test and results. Will see a dermatologist at the cancer center for the rash, but it is staying in the same area, as the transplant doc said it would be an odd presentation of skin GVHD because the rash is staying in the same area.
Fingers crossed
and we all can use some positive thoughts
To go from a hemoglobin in the mid 6 range when diagnosed to a new high just over 14 today was pretty nice, of course we try and temper our excitement. That roller coaster can, and has been, hell. As they say with this disease, truth is in the marrow ... we'll see.
Hope all is well in your world, especially with a visit from your daughter.
round one of immunizations in May, round two of immunizations this past week, third round scheduled for July, then a 6-12 month wait and testing to see the reaction.
These are all the vaccinations we had as kids, then again my husband is still under two years old and the literature they give you speaks of "your newborn, child, infant."
So we're moving forward and we'll see what the future holds.
Best to all on their journey
and thanks so much, wishing the same for you and your family as well
of the dead vaccines done, still need to look at the live vaccinations. Seems they give info as needed as you move along and the vaccination process is about two years from beginning to end ... spring 2014!
The monthly Pentamidine treatments have ended, just barely made the minimum CD4 count last month, and happily that can be checked off the list as another milestone.
We're still very careful about many things and we'll see what the bone marrow biopsy shows at the two year mark in October.
One foot in front of the other and best wishes to all on their journey.
all results take 2-3 weeks after the bone marrow biopsy, but some preliminary results take a few days. As for the roller coaster, as it is for so many people, it will never be over ... it just becomes less bumpy. Stats are about 50% survival at 5 years, hoping to be on the right side of that 50% And maybe not be bankrupt, just a side effect of our HC system
Still very happy to have treatments options available that others do not, we are very fortunate. I'll be curious to hear whether Robin Roberts has a T cell depleted transplant or not, she'll be at the same hospital with the same transplant team, I'm glad her story has highlighted blood cancers and wish her well.
Hope you are doing OK as is everyone else on this forum, it is a tough road.
Hugs
for you and your family
Yes, taking it step by step. Sage advice for us all.
hope you and your loved one are doing OK
and the two year bone marrow biopsy looks good and we are very much relieved.
I'll try and remember your words of wisdom when there is something minor we disagree upon, at this point most almost everything else is minor!
on what is important.
on someone with a compromised immune system, metapneumovirus, never heard of it before, but we are all used to googling the latest issue.
All in all things are going fairly well, the IGG level could be higher and could have something to do with the slow reaction to fight off next "little thing."
Step by step and happy for each day that we have
it is so easy to remember all the negatives and things we take for granted, but I wanted to share some positive news.
My husband flew to Canada in June on a business trip and then we flew to the Virgin Islands in July to celebrate a milestone birthday for a family member. We've been back for a week and no illness from the trip, knock wood, and so happy for things we always took for granted. Airplanes can be germ invested places for someone whose immune system is not what it used to be.
Thinking of everyone here who is still battling the challenges of this disease
we do cherish the small steps back into the real world
for a long future. We saw the transplant doc yesterday, all of his counts are in the normal range and she does not need to see him until his 4th anniversary, which is October 2014. They tested his response to the vaccinations, if all goes well with the results, he will just need to be followed by his local hem onc and internist during the next year.
Step by step
how are you doing?
Wish we could just wave a wand or wiggle our noses to make things right
To say it is balancing act going through treatment is a significant understatement. Most people, including my husband, have participated in several trials. It is difficult to know when to say yes and when to say no, and we do not always have the luxury of time to make that decision.
Thankfully medicine continues to advance each year and we need to take that into account and thank all those who have taken a chance ... while not getting too crazy with the latest meds.
Let us know how you are doing and thanks again
it appears that he has fought off this latest cold in record time, so for now we plan on going. This will be a healing trip and we plan to leave the stress behind
I wish everyone had this 'difficult' decision to make and I feel bad even mentioning it. On one hand it is the life post transplant with a compromised immune system, on the other hand we are so fortunate to have had access to good care and a wonderful support system.
My sister and BIL are fantastic, we would not be as far along in this journey without them!
Thanks so much for your well wishes!
relapse of the same leukemia in the marrow with a higher blast count than before. Relapse after a first stem cell transplant is not good, but it has been over 3 years and that is a positive, so they will most likely offer more chemo and another transplant. But the odds diminish.
We missed two phone calls tonight from the doc at Sloan about the new plan so will call in the a.m. but they want to admit him soon to start treatment. If we are lucky four more months in the city and then we'll be home for a long, long time ... fingers and everything else crossed.
How are you doing? You have not had an easy time. We're still on this roller coaster, but it should be more fun
I know it has not been easy and that is an understatement. I have not been in your shoes and can only imagine how tired you are
They are admitting my husband tomorrow morning for, hopefully, just a month. If remission is achieved then possibly another transplant.
and we wish you the best as well
Have settled into the same routine as we did four years ago, side effects were tolerable back then, so hoping for same this time.
and so sorry for the setback.
Good thoughts for you and your husband.
remember I said I was nervous
Friday will be week two in the hospital, chemo is finished and so is his immune system, now we wait for it to recover as they try and keep him as safe as possible from internal and external infections. All fingers and toes crossed that this dose will bring him into remission once again. If all goes well they'll look to do another transplant the end of December, still looking at the best donor and method.
Were there elections? I barely noticed and we did not vote being out of state at the last minute.
Be well
is coming from habit or from your gut. Sigh. I wish your nervousness had been caused by habit, and it wasn't that your gut was right.
This has to be so grueling for the two of you. Keeping my fingers and toes crossed with you. Good thoughts. prayers and
I also want to thank you for some of the wisdom you have shared in this group. It is helping me quite a bit. When I found out I had cancer, a dear friend of mine found out the same week she had cancer too. The difference is that hers turned out to be small cell lung cancer that has metastasized to the brain. I've been trying to be one of those people you want in your "life boat".
or a real cause for concern. I so wish my concern was unfounded and cannot believe this is happening, I want to go back to just worrying for no reason
But we have to deal with the hand that has been dealt and do the best we can to make sure he has the proper treatment. Everyone on this forum has a steep learning curve with things we never planned to study, but we do what needs to done, the best we can.
I'm so happy that you read the bit about being in someone's lifeboat, it is much harder to do when you have your own challenges. The strange thing is that a few people who were not there before have surfaced this time which is great, we can all use the support. Then we have the people that have been a constant source of support no matter what is going on in their lives.
We just passed week two in the hospital and if all goes well there will be just two more weeks, then home for a few weeks and back for a second transplant.
Thanks for the good wishes and prayers, we'll just try and put one foot in front of the other, with the help of those in our lifeboat
Slip, I'm so sorry to read this. I can only offer heartfelt mental and emotional help wishing I could do more.
words fail me.
your friend, OTC
and so glad to be here!
Back to the city on Tuesday for another bone marrow biopsy to see if this last round of chemo achieved remission, if so then back for the second transplant admission around the 22nd of December.
One step in front of the other
and to put it mildly this sucks. We found out that he has unfavorable mutation, was this there four years ago and the tests are just more sensitive today? The transplant doc raised this question ... the science is moving rapidly.
I often wonder how I would react if I were the patient instead of the caregiver? Would I have the fortitude to go through this again???
They did not do the biopsy last week as his marrow was in full recovery mode, platelets over 800 and other signs ... so they would not get an accurate reading. The doc said this was not necessarily a sign of remission, just that the marrow needed to calm down a little before getting an true a reading, so we go back next week to see where things stand. They moved the readmission date to 12/24, but we'll just have to see what the biopsy says as that could change. Being lucky means he'll be admitted Christmas Eve, hope I'm not jinxing things!
In the meantime we have had a great holiday weekend with family and friends, with a WBC In the 8's from 0.1 two weeks ago the doc said he could enjoy going out have some 'good' wine, in moderation, over the holidays. Do it while you can, every day counts.
Continue to take those steps day by day, it is hard stepping out, but it is so important!
Mind over matter .... Happy three months!!!
Thanks
and we'll have the preliminary results of the BMB they will do tomorrow by the end of the week. Never have an important visit scheduled for a Friday, we learned the hard way on 10/17.
Feeling normal again while surrounded by family and friends does help, unfortunately we took our daughter to the airport yesterday afternoon for her flight back to Florida. My husband came home and had a good nap on the couch, push a little with a fun filled weekend and then listen to what the body is telling you ... it is all a balancing act. But we had a great weekend, took in a movie and dinner while the WBC was in normal range and had some friends over ... all a good combo. My daughter was in heaven having NJ pizza and someone else pump gas Your taste buds will come back ... just give it time.
Gearing up for being away from home for the next four plus months, will probably be back for a few days in between, but need to plan for a NY winter. We had planned to be in Florida for Christmas with my daughter and sister (guess I'm not too worried about a bathing suit) but they are coming up here for a few days instead ... so nice they can be and are willing to be flexible.
Thanks! I hope things stay on schedule, even though it might be inconvenient, need to keep our eyes on the prize of beating this disease.
Keep moving!
admission will be 12/24 when they'll insert a Hickman port, chemo begins on 12/25 and a transplant on 12/31.
A new immune system for a New Year
we had hoped to celebrate both Christmas Eve and the last day of Hanukkah in Florida with family, but plans changed. We are very thankful that the chemo controlled the leukemia enough to move to a second transplant, so yes, extremely happy that the plan is in place. I'll admit there could be a better time, but when remission comes you seize the moment, the rest is just fluff.
Hope you are doing well and feeling better each day ... keep moving
sometimes I/we assume that all on the cancer forum understand certain terminology, but each disease comes with their own challenges and strange ways unfamiliar to other patients. The Hickman port is a central line from which they will not only administer chemo, but can also do frequent blood tests and administer fluids/drugs at the same time, there will be three lines they can access from this port for various things.
The first transplant worked for four years. At the annual check up the leukemia had returned and my husband was 60% donor, after this last chemo he was 100% donor, but they do not expect that to last. So he is looking at a second bone marrow transplant (in pure terms it is a second stem cell transplant, which has more to do with how the donor cells are extracted) and has a lower chance of a cure, but hopefully a longer remission. It is a chance at something ... maybe just buying more time.
We never know where we might fall on the statistics that we read about, will we fall into the best or the lowest point of the stats???
In the past four years I know they have made strides to combat certain blood cancers, but I am only living through this as a caregiver and not as a patient.
Thanks again Tab
it looks like your dance card is going to be filled for the foreseeable future.
I wish you and your husband the very best I really do.
It's hard to accept "merry christmases" when things are like this but I have to say it, Merry Christmas
and may you both come out the other side doing much better than today, much better.
I really suck at wordsmithing, sorry.
we did just fine. The Xmas photo has five masked, gowned and gloved people and one patient secured to his Christmas pole (patient pal) and six pumps injecting various meds and fluids.
The sparkling cider in plastic glasses (nurse found a bottle opener) did not hold a candle to the usual Bellini, but we were all together which is what counts.
One step at a time ... again!
Thanks
Hopefully you were able to celebrate a little with family and friends!
Last edited Sun Mar 1, 2015, 01:09 AM - Edit history (1)
when life or death situations happen other situations in life seem to take a back seat.
Wising you well with your move
P.S. Thanks for the Valentine's hearts, I believe that some, or most, came from those that read this forum. 
we have been away from home for five of the last six months. My husband was an inpatient for two months, we had a month break at home between induction chemo and transplant admissions and have been staying at an American Cancer Society facility for the past three months to be close to his transplant hospital. We are ready to take the next step for a second time, we did this four years ago before relapse.
Moving forward day by day.
Be well
the things we take for granted become more important. We are grateful for the lodging provided by Hope Lodge and all the people who work there and volunteer their time and the other families we met along the way ... still there is no place like home!
How are you doing, I know it has not been easy for you.
it is So Nice to be home! We had company for the first two weekends, family the first weekend and new friends from Hope Lodge who live far away and came for a weekend away from the lodge and city. We are trying to get back to a new normal, cannot do too much, essentially my husband is four months old No crowds, watch what you eat, frequent check ups etc. He did start the 'investigational' drug (Nexavar) that is FDA approved for other cancers and not acute myeloid leukemia to hopefully prevent another relapse, fingers crossed that it works without any nasty side effects. On a low dose, but they are looking to increase and watching the side effects. Trying to remain boring.
Thanks so much for your kind words, they are very much appreciated!!!
six month biopsy was all good, but we have been here before. No evidence of disease and 100% donor. My husband started the 'investigational drug Nexavar' about 100 days post transplant at a quarter of the dose. It appears that the most significant side effect has been in his blood pressure and he is now taking meds, they are not talking about increasing the dose at this point. His other counts look good, high potassium which the immunosuppressant drug does not help and higher creatinine levels, these have come back down in the last few weeks. They are monitoring these levels and adjusting meds as needed. Nothing too much to complain about, other than the fact that he relapsed and needed another allo transplant
Cataract surgery has been put on the table today and needs to be investigated as to when this should be done. Dry eyes, which could or not be some GVHD. All in all things are well, still shying away from crowds and uncooked veggies and fruit, no swimming etc. but generally the days are back to a normal routine.
One day at a time!
Thanks for the update. One day at a time!
and hope the good news continues.
Please let us know how you are doing
a good visit at Sloan today, counts are holding, reducing the immunosuppressant drug, potassium just barely down to the normal range.
Do not have to go back to Sloan for another month
Booked tickets to spend the holidays with our daughter and my sister in Florida. We used our airline credits from last year's cancelled trip, when we all celebrated Christmas wearing masks, gloves and gowns in a small room at MSK after a relapse.
Moving forward and no complaints! One day, week, or month at a time
is good.
If you are going to be on the west central coast, give us a shout. We can always find masks, gowns and wine glasses in our sizes to join the celebrations.
in the Ft Myers area, assuming that is slightly south of west central area of Florida, but would need to consult a map!
I cannot believe that I mentioned EBV in my post it was detected and resulted a day later from Monday's blood test, but it could just be a passing number and his system needs to fight it off! So EBV be gone!!! Another blood test on Friday, fingers crossed! Need some good thoughts on that count.
Hoping we are past the masks, gowns and gloves and can just move on to the wine glasses You should see our Christmas 2014 picture in the hospital room, blue gloves with yellow gowns and masks! Will let you know and if we are in striking distance would love to meet a fellow a DU'er.
guess there is a reason for those old sayings!
Sorry to hear her employer gave her the boot, it hurts financially and emotionally for both of you, try and remember to give her an extra hug every day
retest for EBV a few days was not detected
The Epstein Barr virus after a transplant, especially after T cell depleted transplant, and this time a fractionated transplant (partially T cell depleted) presents as an EBV lymphoma, for which more chemo is needed, been there, done that four plus years ago.
So all good news, now onto another blood test in two weeks.
Moving forward, one day/week at a time
Sending you lots of s
just back from a wonderful dinner out with friends, we've mostly been hiding from germs and not wanting to spend money, but it was great. They toasted my husband for having survived two allogeneic transplants and all that is involved with the process, we could not have come this far without the love and support of family and friends. Another friend of ours was absent, he had a heart transplant less than two weeks ago and was released a week and a half after transplant. He is doing great, but we also know, just because you are home the follow up visits and worries are still there!
For the first time in eleven months my husband has a little over two weeks where he will not need another blood test, wonderful and also a little worrying, when we want to know the numbers all the time.
We are all very thankful for the advances of science, a wonderful support system and a health care plan that has a variety of hospitals from which to choose, even though the annual out pocket expenses might bankrupt you.
Moving forward, one day, one week at a time for everyone fighting this battle.
not counting but we are well over 10 BMB's by now. Fingers crossed, as we do with each blood draw and as so many do with each scan.
Day by day
I had crap for platelets, often to the extent that it wasn't safe to have chemo, which seemed to make it worse. The question was then, was it purely the chemo making my platelet levels go up and down, or had I ultimately damaged my bone marrow? We did a bone marrow biopsy and I was diagnosed with I was diagnosed with - ah, damn, can't recall myelodysplastic syndrome or something - but basically it was reduced ability to make platelets.
So a bone marrow transplant was suggested, and I drove to Boston to Brigham+Womens/Dana Farber for evaluation, but they weren't convinced I could tolerate a bone marrow transplant - I don't know why any more; I want to say it was the platelets but that seems counter-intuitive.
Anyway, although the biopsy said I should, the evaluation said I shouldn't (or couldn't). I have no idea if you can take anything away from this - maybe you've already been evaluated - but if not, temper it by understanding that even if the biopsy says yes, the doctors can still say no. It's not an automatic. I apologize if I'm telling you something you already know (and if you do, maybe someone else reading this will snag a tiny bit more knowledge about this fun cancer thing).
Wishing you the best; p.m. me if you want.
we heard today that preliminary results from the biopsy look good, final results next week, but it is always a tense moment. My husband was originally diagnosed with myelodysplastic syndrome (RAEB 2) which was not controlled by the standard front line drugs and led to acute myeloid leukemia.
Another thing to remember is that one hospital might say no, but another one might say yes. We lived with someone at Hope Lodge in NYC for a few months who had a rare type of lymphoma. Sloan originally said yes and then declined when another complication arose, Columbia helped to get her in remission and Cornell did the transplant, which was a combo cord and haplo. It was a long process switching between hospitals and her platelets were in the teens or twenties when she returned home to Florida after being in NY for almost a year. But 14 months later her counts are all back in the normal range and she has been back to work full time.
Wishing you have the insurance issue settled and are feeling OK.
and the second round scheduled beginning of April.
The 'second' one year bone marrow biopsy after transplant looks good. Many people do not get a chance to have a second bone marrow transplant, we are fortunate on so many levels!
Biopsy two weeks ago came back positive for skin cancer, but not melanoma, this is just a bump in the road. Additional surgery scheduled for the end of this month to remove any remaining cancer and then we'll hopefully put that to rest.
Not sure where we are on this roller coaster of life, not to mention navigating the financial challenges, but we look forward.
Be well.
third set of vaccinations are done (again) and another taper of the tacrolimus today. Hopefully in a few months he will be off the immunosuppressant drug and they will remove the cataract which has been an annoyance.
They are not going to do an 18 month bone marrow biopsy as they have found it not worthwhile. Me being the caregiver I love tests as a reassurance, being the patient I would hate another bone marrow biopsy. After the second transplant they now recommend continuing pentamidine treatments for at least another year to prevent a certain type of pneumonia, it is interesting to watch the evolving science, but honestly I would prefer to be totally ignorant on the subject.
A long day at Sloan, but no complaints
counts holding and bouncing around a little, whites and neutrophils down a bit, hemoglobin and platelets up a little, such is life. Ultimately I would say the trend is stable which is always welcome. Next blood test in 6 weeks, just about the longest since second transplant, but I feel comfortable. Blood tests last month showed 100% donor, all is well.
Next full test is early/mid December just before the 2 year anniversary of the second transplant, they will do a variety of tests, another 30K dollar day of extensive measurements.
Fingers crossed all will be well
Step by step and year by year we march forward, but gosh it can be worrisome sometimes.
but still encouraging
It has been almost two years since the second allogeneic transplant and the CBC results look good, truth is always in the bone marrow biopsy in this case, and we'll not know the results for a few days or a week.
Sure there are problems associated with all the chemo that takes you to the edge, but very happy to manage those problems.
We move forward, one day at a time.
Edit, formerly slipslidingaway before the hack.
4 years ago I was a regular poster on this board. My wife was diagnosed with cholaniocarcenoma and had a 7% chance of living. She had a 5% chance of getting off the operating table and going home.
She did both.
I don't kow why I felt the need to tell you this but this and other threads helped me get a grip on the reality of it all.
Best of everything to all of you that suffer from this disease, I can't say any more.
