Holding Our Breath

[Luke and Margaret]

Our oncologist did a bone marrow today, quite unexpectedly. I’ve been looking at the blood counts. The platelets are rising again (yay pineapple) but the hemoglobin is still dropping. Immature cells are at 11%. Add that to the last known level of blasts…… Please God, don’t let it be too late.

We should know by Thursday. The doc set another appointment for then, and I have the sneaking suspicion that he put a rush on the biopsy.
Margaret

[Caroline]

Luke and Margaret.

My prayers, as always are with you.

Caroline

[Terri]

Praying all is well and the test show great results

[Suzanne]

don’t totally panic and thinkthings like “too late” if it has progressed. It would not be good news but it was not until that happened that I found the road to remission with the heavy chemo they save until there is no other way. It worked for me so keep right on hoping no matter what the BMB results. It just might change the directions you take to fight the disease. .

[Luke and Margaret]

Hi Suzanne
Luke’s situation is so darned precarious – timing is everything. Because of heart damage caused by a virus within days of diagnosis, chemo is not an option currently. If he can hold on another while, then it could be, as the heart was recovering. However, last week’s cold virus led to pneumonia, and we don’t really know whether that set him back again.

As long as he was responding to great nutrition, the astounding pineapple juice, and supplements it felt like we might get our time. The last week has been horrible, though.

You’re right, it ain’t over yet. If the levels continue to hold, our best option is still available – Vidaza. It doesn’t affect the heart. That could buy him more time for the heart to mend, and be ready for the big guns when that happens.

If it is too late for Vidaza, I’m not sure what would happen next. The cardiologist says he wants 40% functioning of the heart before chemo. Two weeks ago we were at 30.

Does anyone know if CMML tends to respond to heavy chemo? If so, what drugs work?
M

[Ensnee]

Hi Margaret,

First, I know you guys are going through a very scary time right now, and I’m pouring positive energy your way. When Hans was admitted to PMH, after he turned acute, he was 95 % acute. He’s had two inductions and one consolidation chemo since then, and he’s responded well, and had a pretty darned good quality of life despite all that. Luckily this drug trial came along just in time. So please don’t give up hope yet.

As for the CMML, the standard chemo does not treat it. In Canada presently, I think the only treatment for it is Hydroxyurea, which for some people keeps it under control for years. Hans took it for about 6 months successfully. Has nobody suggested Luke take it? The only possible “cure” right now is a stem cell transplant. Of course, that has it’s own risks, and can make someone more sick, apparently, with graft vs. host problems. Even if you have CMML which has transformed to AML, putting the AML into remission still leaves you with the CMML. It’s a pretty bleak cycle, isn’t it? Right now I find I just can’t think past the immediate future. I have the strength to deal with one day at a time. I know you have some touchy sort of
goals you want to reach with Luke. You are doing everything you can. And please remember that if Luke doesn’t read his inspirational material or meditate every day, it’s not going to affect his outcome definitively. Dr. Schuh has said to us that he’s seen some very positive people lose their fight, and some absolutely miserable, negative so-and-so’s survive.

I hope what I’m writing is helpful, and not too depressing! Many healing hugs to you both.

Esme

[Suzanne]

Margaret, Don’t know enough to answer. cmml is very different then what I had. I am wishing you luck and hoping you get the time you need. In the meantime enjoy as much of the days you have as you can.

[Luke and Margaret]

What does it mean, to be in remission?

Luke would like to know how much he will “get back”. For instance, he has lost 26 pounds since August. He wasn’t a big guy to begin with; most of the loss is muscle. Will it come back? Will he feel healthy again?

Most importantly to him, will he have to continue to take all this crappy supplemental stuuf, especially the fish oil? (The answer to that is “probably” cause of the heart problem, and I have broken that bad news to him already!)

Sooo….. can anybody help us here?
M

[Ensnee]

Margaret, according to what the docs say at PMH, remission seems to be when the blast count in the bone marrow is below 5%. That’s the measure they used when Hans was in the previous clinical trial.

As far as the fish oil, is it not as effective to take capsules instead of the liquid? If he really can’t tolerate the cod liver oil, wouldn’t it at least help to take salmon oil capsules? I tried halibut oil capsules once, and I was burping up the taste all day. Couldn’t stand it! How about flax oil capsules?

Sorry I can’t be of more help!

hugs,
Esme

[Jimbob]

i use Omega-3 purified fish oil softgels from swansonvitamins.

[Luke and Margaret]

Hi all;
Thanks for the information. Getting the fish oil in a more palatable format would be helpful; it would remove one more irritant in a long line of them.

Beyond the blast percentage, when someone is in remission do they “feel” better? Will he regain lost weight, muscle mass and energy? I think that’s the question most on Luke’s mind these days. I think he’s looking for an answer to “what’s the point”?
Margaret

[Ensnee]

Margaret, Hans definitely felt better, gained weight, had more energy and stopped having spells of vomiting/”dire rear” since he started having chemo in April, even when he relapsed twice. His quality of life did improve. He was biking and taking walks several times a day, working in the garden, etc. The only thing he hasn’t gotten back to yet is playing squash — which would make him ecstatic. His platelets have just been too low for that.

I know it must be so hard for Luke to stay positive when he’s feeling so unwell. It’s not like having the flu, when you expect to feel better in the near future. Many many wishes that he will fell somewhat better soon…

hugs,
Esme

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