They certainly have the right priorities. Betty88 and I extend you a big hug and a welcome from Brooklyn where we, too, are taking it step by step and one day at a time.

who are in a position to help and understand that stress does not help the immune system recover!

Big hugs for you both.

I was just diagnosed and my bros. are stepping up to help me financially, too. I've had "issues" with them about doing more for my mother (she has Alzheimer's) but they're rallying around me this time.

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

Every day has its highs and lows. Right now I think I am going up, but I may be coming down. I have made so many wonderful friends throughout the ordeal. It's hard to believe, but I actually look forward to seeing them at chemo. The bond between us makes us so much stronger and puts little problems into perspective.

Step by step - I have your hand. I know you have mine. Peace, cmd

and do help to put things in perspective as well.

We just need to keep moving and supporting each other.

It's so nice to go to gatherings of other families with autistic children - they are relaxed and they get it. I'm guessing we are going to find the same thing in this situation. Though, I wonder, do people group up according to their diagnoses?

I'm guessing I'm about to find out. That's another thing I wonder. Will I be able to be with him while he gets chemo?

"Though, I wonder, do people group up according to their diagnoses?"

For the most part I would say no, it really depends more on the person and how talkative they are about their disease, treatment and also the set up where one is receiving treatment (private treatment rooms or one large room, inpatient vs. outpatient) Almost all of my husband's chemo was inpatient so not too many other patients were nearby.

When we moved over to Hope Lodge and lived there for 100 days we hardly ever spoke of treatment once the basics of "why are you here" were established. In general we just tried to be supportive of one another and pass the time between visits to the hospital. Conversation drifted to current events, where to buy what, who is making what for dinner etc.

"I'm guessing I'm about to find out. That's another thing I wonder. Will I be able to be with him while he gets chemo?"

I would think you'll be able to stay with him, never heard of anyone being told to leave the room, wishing you the best during this challenging time.

Last edited Tue Jan 10, 2012, 07:36 PM - Edit history (1)

and this clip of Gene Wilder only has a small clip.

Gene Wilder Talks about Non-Hodgkins Lymphoma

a person like Gene Wilder would be exempt from cancer after Gilda. Clearly, I don't rule the world and I can't say I'm altogether happy about that. I think this would be called the anger stage of grief. Or the uber control fantasy part of it.

I printed out the Living Will and Durable Power of Attorney for Washington tonight. I can't believe this is happening.

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

for the urology issue, guess there is not always a direct relationship to the primary concern of the moment.

Since the second antibiotic his WBC has increased without the help of Neupogen or Neulasta, so we are very happy. Of course there is always the next bone marrow biopsy and blood test and then waiting to hear the current numbers, for now all is well.

Wishing everyone on this forum the best in the journey ahead.

You husband has been through some awful stuff. I hope he is doing better.

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

We join you in thinking positive thoughts about your biopsy plus keeping fingers and toes 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

I hope the future hold many good things for you and your husband.

and thanks so much, wishing the same for you and your family as well

his childhood vaccines are null and void? Woah.

sorry that you had to check in on this group, wishing you and your family the best.

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.

and blood counts are normal. Looking forward, with some (or shall I say some major) apprehension to the 2 year bone marrow biopsy on 10/1 ... truth is always in the BMB. If all looks good then this is the last bone marrow biopsy and they'll just monitor blood counts going forward and only do a BMB if counts drop, so some excitement and some apprehension.

That being said Sloan has their annual bone marrow celebration on 10/16 and we plan to meet with friends from Hope Lodge for dinner before attending the celebration.

Step by step ... and best wishes to all on their journey.

How soon will you know after the biospy? I hope your roller coaster ride is soon over.

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

I know what my wife goes through (I'm the patient). It's not easy, but your support of your husband can make all the world of difference to him.

Here's hoping good thoughts!

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!

Cancer has a way of changing how you look at life. I always tried to teach my daughter to choose her battles carefully. Cancer sure teaches you what is important.

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

I'm glad those trips didn't cause any problems.

we do cherish the small steps back into the real world

for survivors. It was so nice to see the name tags, transplant 2001, 9 years etc. The oldest survivor was from the mid 1980's and the newest and most recognized was Robin Roberts, although she she was not one of the speakers. All in all it was a great night with dinner beforehand with friends from Hope Lodge.
No doubt we've had our bumps in the road, but all in all in all we are very pleased to celebrating another year!
We did finally sell our home, these plus or minus $10,000. annual out of pocket maximums do take a toll ... approaching year five. Very happy to have had the providers we needed with insurance, but there is another financial level that complicates matters on top of the medical issues.
Wishing everyone well, one step at a time.

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

All the best to you

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

comes into play.

My sister, who lives in the UK, arranged for a flight to visit them and then have a holiday in a resort town in Turkey to celebrate a birthday. After a wedding this weekend my husband has come down with a cold, all other colds (or something) have lasted several weeks.

When you pass a certain milestone after transplant the doc says that each adventure has to be weighed as a risk versus reward scenario and you have to make that decision yourself.

It is not always easy to make these decisions .... hate going into this trip with a compromised immune system.

All that being said, I am happy to have to such a dilemma and a wonderful sister... still nervous and we'll see if we make the flight.

Fingers crossed!

That sister of yours really is wonderful!

I can't imagine having to try and make this decision but I hope you are able to go. Travelling is good for the soul and healing in its' own right.
I'm crossing my fingers for you!

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!

we are waiting to hear what the options are, but I know from reading, the long term holds fewer promises.

One day at a time.

How "not so good"?

((((hugs))))

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 don't even post half the shit I go through. Last weekend my ostomy (not exactly cancer specific, but a result of my cancer surgery) was bleeding; I lost a litre of blood; spent the weekend in the emergency room and hospital.

I'm so tired of this crap. I know I should keep "fighting" but damn, it's hard to get motivated for that sometimes.

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

So sorry to hear about the relapse. Glad you are home for a while before the next chapter begins in December although it sure adds a stressful shadow to the holiday season. Keep us posted on how things go with the transplant- stay strong and feel free to pm me if you ever feel like talking. Yesterday was my 3 month post transplant anniversary-it's a challenging journey to be sure but doable.

One day at a time.

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

So great that you managed to squeeze in some holiday time with friends and family. Makes such a difference- as does having some wine! I'm finally able to drink wine now once in a while (although many wines no longer taste all that great these days-guess the chemo damaged my taste buds). But you are indeed correct-make every day count. And every relationship. How lucky he is to have you with him through this journey. I do hope you are making sure to take care of you too however...

Hope things stay on schedule for this next chapter in December.

Stay in touch please!

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!

blasts were 3% in yesterday's biopsy. Could be better, but could be So much worse!

Under 5% they will do a transplant, above that, they will be looking to do more chemo ... an early Christmas present.

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

Le Chaim - a toast to life - and in this case, a new start, for the new year.

Happy that the plan is officially in place- must be a big relief to actually begin to plan and prepare.

Will be thinking of you.

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

I don't know what a Hickman port is - but best of wishes; without following the thread, you're looking at a bone marrow transplant? Apologies if I'm wrong on that. But a serious start to a new life - that's incredible.

Best of luck to you.

- Tab

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 Fri Feb 27, 2015, 12:17 PM - Edit history (1)

after two plus months in NYC we are home for three nights and it feels so good!

My sister and angel, who lives in the UK, planned to stop by for several days and as the doc was stretching out visits it worked our well. We are taking advantage of this moment in time.

Health care costs in the UK and the world cannot even be discussed, the US is so far behind! WTF are we thinking and doing in that respect, being stupid and lacking compassion comes to mind, but that is a whole different topic!

Relapse sucks, having a second allogeneic transplant is not for the faint of heart. Google is not your friend, the word curative is dismissed when discussing a second allo transplant. Hoping to be in that in small percentage that moves forward, hope becomes a favorite word in the cancer arena. All that being said my husband has a strong will and is doing well. They did detect a certain mutation, FTL 3, which makes things more complicated as the cancer is more aggressive.

Choices are an insurance policy with a drug Nexavar, which is FDA approved, that could cause could low counts and liver problems. The other choice is to hope that a second transplant, from the same donor, will wipe out any leukemia cells.

Still on the roller coaster of life and wishing all a safe journey.

But what a long strange trip it has been!

Last edited Sun Mar 1, 2015, 12:09 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

(not to presume how you feel) but getting treated at an external site you must be craving normality (home).

I apologize if I misinterpreted but I wish you and your other the very very best. Little bits at a time.

- t

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.

I'm glad you are home. Your attitude always impresses me so much. I know your husband must just be relieved to have you by his side during this ordeal.

So, what's next? I hope not much and now you are in the get tests, immunization, etc. phase. Fingers crossed, good vibes being sent!

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!

But very happy to hear the excellent news of no evidence of disease now. And one day at a time is the only way forward.

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.

it's a distance from Ft Myers but there is always the chance we can go half the distance.

My wife seems to be healing but she got the boot from her employer and a pittance of a severance package so our setbacks are
mainly monetary at this time.

Hopefully the legal guys can get something better for her. It's a bad weekend to talk to a lawyer.

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.

it has been almost a year since my husband's second allogeneic transplant.

We had a twelve hour day, door to door, for a variety of tests at Sloan today. Some counts have been dropping, but the truth will be in the bone marrow biopsy that they did today.

Fingers crossed for a good outcome!

I did a bone marrow biopsy a year or so ago.

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.

round of vaccinations today.

Decided to continue the 'investigational drug' through the end of the year. There are no stats of using this drug after a second transplant, but if it Might help to prevent relapse and if there are not any horrible side effects, other than costs!, it is worth a shot.

You never know if you are paving a way for someone else in the future, so many trials, additional blood and BMB's, but if they can learn something to help others without too much inconvenience, then it is all worth it.

So uncharted, but relatively calm seas ahead ... no complaints and we thank all the docs and nurses who have been so caring.

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

maybe the Nexavar as an investigational drug is playing a part, good/bad, we'll find out at some point in the future.

We're in uncharted territory here, there are no stats for a second transplant with a the FLT3 mutation, that put a whole new spin on things, hence the 'investigational' use of Nexavar.

What happens when Nexavar stops in a few months, who knows, Did it help or not?

Fingers crossed, we have no clue as to the next road that needs to travelled, but we are open to a challenge, but please do not make it too strenuous, we're running out of energy.

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.

the cancer was under control, it was just all those other side effects that eventually took their toll, needless to say that after 44 years I am heartbroken.

But always be an advocate for yourself or a loved one, it can make a difference. During the extra 7 plus years my husband was able to watch our son graduate high school and then college and our daughter graduate med school, the years were not always rosy, but very happy for the extra years we had together.

Science is making miracles happen every year, be the one that takes the next step forward for others yet to come.

Diagnoses and treatment get better all the time. Missing a loved one after fighting so hard together is hard. You know that you did everything you could. And your children will carry on. Hugs!

slowly accepting how different my life is and will be in the future.

Hope you are doing well and are always asking questions.

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.

...I have NO skills driving in Seattle traffic and yet we feel Hutch is the best for him...but his family and all support system here....not sure what to do.


Hes just had a CAT scan and 2 'worrisome'...masses on one kidney. Trip to urologist next ..then biopsy? Im scared hes scared even worse and dang it...6 mos until he gets medicare.



(((hugs))) to you and your family for what you are going thru.. I may have some ? for you about the tx in Seattle vs closer to home.

How does the unaffected spouse hold it together for the other?


Is it too late to move to Canada?