Where the Heck are We?

[Darice]

Haven't been on for a while, so I have some updating to do. My signature reflects the state of the tMDS at diagnosis, 3.5 years ago. I just updated the age of my hubby to 73, but not the rest of it. I need to hunt up the results from the most recent (Jan/Feb 2014) bone marrow biopsy, but those results showed a progression of the disease, a little more chromosome damage, and something like 75% involvement rather than the 51% showing here.

The BMSCT 6+ years ago was to get rid of the NHL and, of course, contributed to the tMDS dx 3.5 years ago. We had tried Vidaza early on--no good--and had just been riding along with Neulasta every 2-3 weeks to keep the whites/ANC up. Early this year, we had a recurrence of the bladder cancer (UTUC . . . it is a nasty one, and recurs often; this time having metastasized to the bladder as well as recurring in its original location, renal pelvis) at about the same time that the blood counts started really dropping again. All three blood lines are affected, but he had been getting along with only the occasional packed red &/or platelet transfusion (as well as the Neulasta every 2-3 weeks). Hospitalization, transfusions, and the decision to start Revlimid.

He was getting weaker and weaker, and we wound up in a skilled nursing/rehab facility starting in March. Pneumonia, Noro virus, staph infection, etc., etc. He was in reverse isolation there, and needing transfusions (both packed red and platelets) twice a week. Quit the Revlimid after just one month . . . started amino caproic acid (to support the platelets) and just hung in there as best we could. After two months there, we came home to hospice.

EVERYONE (hospice personnel, skilled nursing personnel, heme/onc, other involved doctors, etc.) expected that he would not last more than a couple of weeks in hospice at best. At this point, he was still getting and needing the Neulasta and twice weekly transfusions. With hospice, you agree to quit all that . . . no labs, no Neulasta, no transfusions.

Four months later we're still here. They don't usually do labs, but I talked them into running CBCs a month or two ago, and the counts were way higher than anyone expected. I don't think his platelets had been above 15 since the beginning of the year (even right after a transfusion) and were mostly at <3 -- they were at 36. The whites and ANC had been mostly under 1 and were 3.8 and 1.6. HBG had been running in the 5-6 range (with a memorable low of 3.4) and HCT in the low teens (low 9.8) and were 9.3 and 29.0. No explanation for the counts . . . I think we all checked to be certain they hadn't run someone else's blood.

He's weak. No question about that. The tMDS is still with us. No question about that. But where do we go from here? We don't have any real options for treating the tMDS, but I'm wondering whether we should/could come out of hospice to at least check on the bladder cancer? Are we letting it get ahead of us? If he is indeed holding his own against the tMDS, should we get back to fighting the other issues? I'm almost afraid that if we take a step against the UTUC (bladder cancer) the tMDS will come back with a vengeance and put us right back where we were 4-5 months ago. The only sensible thing to do with the UTUC is to go in surgically and take a look . . . might try scans first, but I'm almost 99% certain that surgery will be the recommendation. Does it make sense to put him through that?

Any thoughts are welcome. Blasts are not an issue . . . or at least they haven't been. I'm sure the iron is higher now after all the transfusions the first four months of the year. I need to talk to all the docs, but I really want to hear from some of you who have been there.

Thanks!

[carrieridge]

Well you have been through the ringer for sure! (are you also on an NHL board? your name sounds familiar). My hubby is 51 and he has tMDS also from NHL treatment. He also had an auto-sct in 2008. Lot's and lot's of treatment even after that for transformed lymphoma. His MDS diagnosis is new and incidently discovered while he was on revelimid (for DLBCL). They told us that he needs a allo-sct, now while things are relatively quiet on the lymphoma front. He has not blasts, but we were told that his type of MDS and with his history, the chances of his turning into AML within a year are fairly high. We have begun the process of the allo-sct (doing all the pre testing now) he needs IVIG also (he's currently running a 101.6 fever), but have to wait until next week. The last thing he needs done is an echocardiogram. His brother is a 10 for 10 match.

Is an allo not an option for your hubby? because of the bladder cancer? How debilitated is he? I can see why you are questioning what you should do.....if his counts are going up on their own, has his energy level gotten any better? If the bladder cancer is not bothering him - maybe just having it scanned would ease you mind that it's not progressing? His lymphomas in remission correct? I trust my husbands lymphoma doctor above all else and we do what she says. do you have a good relationshp (open) with his doctors? You can ask the question (I have) what would they do in your shoes? What does your hubby want to do?

Carrie, wife to Mike

[Darice]

Hi, Carrie . . . thanks for responding. Sounds like we have a lot in common. My hubby is 73, and that is probably the biggest thing ruling out trying an allo SCT. He also has a bunch of other issues . . . the bladder cancer I talked about, a possible/probable thyroid cancer, A-Fib, diabetes . . . he's amazingly strong and tough, but just has a LOT going on.

One of the problems with being on Hospice is that they basically take over your entire health care. We don't see any of our previous doctors . . . that's just part of the agreement with hospice. We stop treatment for the admitting dx and go with their medical team for everything. We could drop out of hospice (temporarily or permanently) and see our other doctors, but otherwise, medicare won't cover anything. We are with hospice because of the tMDS . . . he was so near to death with that just a couple of months ago that no one thought he would survive . . . but you are, in effect, going into hospice with everything else, too. And hospice just doesn't do scans or labs or chemos or surgeries or other treatments . . . for the admitting dx or any other condition. So I can call the "old" docs and hope they will return my call even though my hubby is technically no longer their patient. Could only do an office visit or any tests or treatments if we leave hospice care.

He is in a hospital bed (at home, provided by hospice) with a bedside commode he can get up to use. He will occasionally walk to an easy chair (maybe 10-12 feet from the bed) and smoke a pipe or just sit for a while, but otherwise is pretty much in bed 24/7. Hasn't left the house since starting hospice 4 months ago. Doctor's visits, treatments, transfusions prior to hospice (from the nursing facility) were managed by medical transport/ambulance. Nothing since except for the hospice nurse and CNAs (and occasional nurse practitioner) who come to the house. However, I think he could possibly get strong enough so that we could go somewhere by our own means . . . just takes a little more work and effort. He is still very weak, but he is stronger than he was four months ago. It would take some doing to get back to "normal" rather than "hospice" medical stuff. And maybe/maybe not worth that effort.

The UTUC (upper urinary tract urothelial carcinoma) bladder cancer) does recur frequently. He had been getting checked every three months since diagnosis almost 4 years ago (just prior to the tMDS dx), and it's just been ongoing surgeries and chemo . . . at least one recurrence each year, probably more. We have always tried to treat it pretty aggressively because the tMDS limits the type of treatment we can use . . . for example, in a "normal" patient they would have removed his kidney (where the cancer first appeared) immediately but that wasn't as good an option for him because of the tMDS. So we go in surgically and cut out any tumors and then treat frequently with the inter-vesical chemo (instilled into the bladder/kidney rather than systemically through the blood) to try to prevent recurrences. The fact that it metastasized to the bladder this last go-round indicates a progression . . . and we did not follow up with chemo and re-checks BECAUSE the tMDS had gone into overdrive and the expectation was that that (tMDS) would kill him before the UTUC could become a problem. But without the chemo, I'm worried that it's progressing and may start causing more problems. However, treatment would be difficult. There just aren't good/easy answers here that I can see.

How wonderful that your husband has such a great match for his SCT in his brother! Sounds like you're moving rapidly in that direction. You know the basic routine, having gone through the auto SCT in 2008, but I'm certain things have changed since then. We'll keep in touch for sure!

Thanks for your thoughts

Darice

[carrieridge]

I wouldn't expect much response from this board though, it's not very active it seems, or there's not much experience here with tMDS for them to chime in.

[rar]

Originally Posted by Darice

My hubby is 73, and that is probably the biggest thing ruling out trying an allo SCT.

Age should not be a primary consideration. I am 74 and had an allo SCT 2 months ago. Doctors never took age into consideration. Other factors might make the doctors hesitant. I heard a nurse in the waiting room tell a couple that his SCT was being put off indefinitely due to insufficient lung capacity.

[Darice]

Thanks, Carrie . . . you are so right about activity . . . and the lack of other tMDS patients . . . it really is a very different disease from the de novo MDS . . . have you found any other reliable source of good information? I have been somewhat active with an online chat group through LLS . . . but it's NHL, not MDS . . . and there are two groups on Inspire that I have somewhat followed. But, again, not specifically MDS, let alone the tMDS. Guess there really just aren't a lot of us. Let's us be sure to stay in touch.

rar: you are right that age shouldn't be the primary or only consideration when contemplating stem cell transplants, but it is a factor. Stem cell transplants are pretty strenuous, and I'm glad you are doing well with yours. I think I read somewhere that the median age for allo SCT is something like 40 . . . yours at 74 is more of an exception. Although, the bone marrow and blood issues that call for SCTs are certainly more likely among the older population, so that median age will probably continue to rise as we get better and better at the procedures. Carrie's hubby and mine each had an "auto" SCT 8 years ago, and things have changed greatly since then, but I know my hubby was considered on the edge of being too old for that one . . . now it would be much more common for someone of his age to get one.

My husband has been fighting cancer for 13 years now and has about a gqzillion co-morbidities. About everything that could go wrong, has. He is incredibly tough and strong and a good fighter, but he is so very tired. I think I counted up recently that he has been through 9 or 10 distinct chemos, some more than once. We would battle the cancer into remission and then it would recur or metastasize. He has had numerous surgeries and radiation as well to try to beat it back. For the past four years he has been battling UTUC (upper urinary tract urothelial carcinoma, a form of bladder cancer that started in his kidney/renal pelvis) with numerous surgeries and chemos. Also some skin cancers along the way and a probable thyroid cancer that we haven't really followed up on because of everything else going on. He is diabetic, got Hep B from a transfusion early on in the NHL (2002), went into A-Fib (probably due to stress on the heart caused by some of the chemos) during a surgery for a major infection in his leg that was never identified and again during the SCT in 2008 . . . he is on medication to prevent that from recurring, and that interferes with a lot of meds he might otherwise take. He does not do well with pain meds (delirium, etc.) and is generally pretty sensitive to many medications. He has had pneumonia (Viral, bacterial, and fungal) 15 to 20 times (because his entire system is so weakened by the battles) noro virus a couple of times, staph, pseudomonas, mersa . . . you name it. Sometimes they haven't even been able to name the infection because he hasn't had the white blood cells to make the pus that they could analyze to ID it. In addition, it would be hard to find a good match for him; he has no relatives in this country, he is German. His brother is in his 80s and his older sister has multiple myeloma. SCT is really just off the table for him . . . I know he would be game to try it again, but the strength just isn't there.

I see you are in Colorado . . . we are in Colorado Springs . . . went to Nebraska for the SCT . . . best choice/option for us at the time.

Thanks!
Darice

[Chirley]

I think it all boils down to, what does your husband want? If he wants to investigate the possibility of further treatment then there's nothing to lose...it's his choice. If he has the investigations and finds there are no options, he's no worse off and you won't be left wondering, what if? But as I said...that's his choice...he might be just too tired to want more investigations let alone more treatment.

You need some serious, truthful conversation about how he really feels about further intervention.

[Darice]

Very good point Chirley, and one we all--caregivers and patients alike--need to keep in mind.

We have always been open and honest in talking about all of this. I'm certain everyone on this board knows how very sobering it is to realize that you MUST get your affairs in order and talk about things that you had expected to be well off in the future, but are now the realities of today.

Jens has always been a fighter, a warrior. It's just his nature. Through much of the battle, he hasn't really wanted to know his prognosis or how bad things are or might become. He recognizes that statistics are just a bunch of numbers, and he has certainly proven them wrong over and over again. His future is not tied to the expectations of the numbers. He has said to me that he is afraid he will stop fighting, or at least not fight as hard, if he fully acknowledges and accepts how bad things are according to the statistics. He doesn't want to know everything. He believes in tomorrow, and he is making plans for next year. He wants to make another trip to Germany, and he would like to invite his sister to come over here for Christmas this year. And this is while he has a tough time standing up beside the bed with the railing to hold on to. I will not crush those hopes and dreams. I will stand beside him as long as he wants to fight on, and hold him in my arms when he is ready to quit. And we do still have quality of life. Not what we had last year, or five years ago, or thirteen years ago before all of this started. But we still have our love and our appreciation for all things beautiful in life. We will still climb into that narrow hospital bed together and snuggle and hold hands as we listen to the music.

I have to be careful not to influence him too much. He relies on what I tell him, and I try very hard to be honest in everything without coloring it. In the end, it is all his decision, and I will honor and support any decision he makes. He knows that. We have talked about it. We have talked about the UTUC and what the next step there would have been without the acceleration of the tMDS. About what might be going on there now, and how it might impact his future. His uro (we have been with him 8-10 years now and trust him implicitly) had a bad accident about a year and a half ago and hasn't yet been able to get back to doing surgeries. This affects our decision. Jens well remembers the discussion with our heme-onc: that there are no more treatment options for the tMDS, nothing more he can do for Jens, and that it is time for hospice. He well remembers the discussions with the hospice folks . . . the end is near and this is what I want and expect. Signing all the paperwork supporting that. He knows everything that I know about the progression of the disease. And the expectations. And yet, despite all of this, he is still here fighting on after four months in hospice. He's just not ready to give up.

I guess my real job is to see that he goes out the way he would want: fighting. Neither one of us wants him to be defeated and depressed at the end, so I have to be careful that I don't let him wear himself out over little things or things that won't make a difference in the end. We don't want this damned tMDS to wear him down, bit by bit, but to take him honorably. Fighting with his sword in hand. That way he will have beaten cancer.

When we first got set up with hospice, one of the things they brought was a set of bright red towels. With the platelets at <3 and doing nothing to support them, the expectation would be that the end would involve a lot of blood and that the red towels would make it less startling and upsetting. Interesting.

[Chirley]

It's a difficult subject to talk about and it's not black and white and there are many shades of grey. Things change from day to day and we are all human and let's face it, sometimes no matter how tired we are, sometimes we just don't want to go.

As I said, if you don't try, you will always wonder...what if? That is as long as Jens is happy to try more investigations.

Good luck no matter what you both decide.