I'm not sure how to say what we learned at Terry's appointment. Instead of getting easier to understand this stuff it seems to be getting harder. WHY?
Well, maybe because I'm looking at it from a different perspective than the doctor, or from what I was looking before, or a number of other reasons - one being frustration I suppose.
Well, maybe because I'm looking at it from a different perspective than the doctor, or from what I was looking before, or a number of other reasons - one being frustration I suppose.
1. Next appointment is April 25th.
We don't have all of the results from the bone marrow biopsy in yet, so I guess we'll just wait for a call from the doctor to explain the rest of it (and that can be 1 or 2 or more weeks).
We don't have all of the results from the bone marrow biopsy in yet, so I guess we'll just wait for a call from the doctor to explain the rest of it (and that can be 1 or 2 or more weeks).
2. Terry is to start taking Fluconazole - a medication for fungal prevention.
He has taken this medication before (after his transplant) and didn't seem to have terrible side affects. It's just precautionary. They are concerned that his immune system is so low.
He has taken this medication before (after his transplant) and didn't seem to have terrible side affects. It's just precautionary. They are concerned that his immune system is so low.
3. Leukemia is still present.
Some results from the bone marrow biopsy are back.
My memory and my paper are fighting each other to remember which was which of the two counts I'll share, and I'm not going to just guess at it. It really doesn't matter anyway.
One part of the biopsy tells us that the leukemia is about 20-25% (it was about 20% last fall, so that's about the same or possibly slightly increased, nothing grand or overly concerning). Another part tells us it's about 50% abnormal population. (one was the bone and one was the marrow, and it's all relative, depending on whether one needle got into a "pocket".)
Some results from the bone marrow biopsy are back.
My memory and my paper are fighting each other to remember which was which of the two counts I'll share, and I'm not going to just guess at it. It really doesn't matter anyway.
One part of the biopsy tells us that the leukemia is about 20-25% (it was about 20% last fall, so that's about the same or possibly slightly increased, nothing grand or overly concerning). Another part tells us it's about 50% abnormal population. (one was the bone and one was the marrow, and it's all relative, depending on whether one needle got into a "pocket".)
4. The MDS is still present, at 32%.
I don't remember what this was last time - I just know that it was present. I do wonder if this is a higher percentage, but don't know.
The doctor seemed to be saying that everything was about the same. She also mentioned the probability of the oral meds suppressing Terry's immune system and keeping his counts low. She wanted him to continue the meds. He wasn't improved, but at least he wasn't worse. She said; "we don't have a Terry with treatment and a Terry without treatment to compare to each other, so we don't know for sure, but this treatment could be what is keeping his disease from progressing." She suggested that he might add a monthly Ritiuxan chemo treatment along with the oral meds as a way to help keep things at bay.
With all that was being said, my mind was saying, "Okay, enough is enough!" "Too many maybes!" and I spoke my mind. Uh Oh! I can get in trouble when I speak my mind. I was so confused and wanted to know. So I said something like this:
"It doesn't seem like the treatments Terry has had are doing much good. Many of the meds and chemos even cause other side effects or problems that are not pleasant, and who really knows what will happen because of them in the future.
For instance, the Ofa treatments (last year) didn't do any good, the Rituxan (a few months ago) didn't seem to help, and the transplant itself didn't do any good and in fact, brought about another cancer (MDS) that we are fighting with now. The Revlimid is possibly causing problems with his immune system and hasn't proved to be beneficial, so why do we do all of this? What good is coming from all of this?"
Ya, I said that ..., and asked that! I really do understand that medical science is not an exact science. Oh Bother!
The doctor kindly told me that it was a good question and was something to consider. She then proceeded to give us three plan options.
Plan A
Hold the Revlimid (stop taking it) for one month to see if there is any change with his neutrophils.
Plan B
Continue the Revlimid and hold course.
Plan C
Continue Revlimid and add a monthly Rituxan.
After sharing these options she looked at me and raised her hand toward me as if showing a "stop" sign, and said, "We already know how you feel", and then turned to Terry and asked him how he felt. He chose plan A. By the way, her gesture toward me was not given in offense, nor did I take it as offensive. It was just something I personally observed and thought was funny and worth noting here - it brings a chuckle to me, so maybe it will to others who read this. Happy is good!
(I'm sure there was other conversation throughout all of this, but I'm pretty focused on what my mind was thinking and speaking out loud. If I knew Terry's mind I'd probably speak it out load too. smile! )
(I know what you're thinking - "Girls talk too much!" ;) I think I'm proving it!)
It will be interesting to see the blood results next month - I'm hoping for positive change. Oh, counts from this appointment:
WBC = 1.9(L) [normal is 4.5-11.0]
RBC = 4.00(L) [normal is 4.50-5.90]
HCT = 34.3(L) [normal is 41.0-53.0]
Platelet Count = 38(L) [normal is 150-400]
Ab Neutrophils results were not back by the time we met the doctor, but we know they are extremely low if they exist at all.
Okay, one last thing. The doctor said that she will tell SCCA to open the search for an unrelated donor for a second transplant. She said that it could take 6 months to find one, so we need to start now. We'll see what happens. We do have mixed emotions about it all.
And, as we have learned with our past experiences, anything I've just said in this post could be completely changed in the near future. ;)
For now though, this is what we've got!
I don't remember what this was last time - I just know that it was present. I do wonder if this is a higher percentage, but don't know.
The doctor seemed to be saying that everything was about the same. She also mentioned the probability of the oral meds suppressing Terry's immune system and keeping his counts low. She wanted him to continue the meds. He wasn't improved, but at least he wasn't worse. She said; "we don't have a Terry with treatment and a Terry without treatment to compare to each other, so we don't know for sure, but this treatment could be what is keeping his disease from progressing." She suggested that he might add a monthly Ritiuxan chemo treatment along with the oral meds as a way to help keep things at bay.
With all that was being said, my mind was saying, "Okay, enough is enough!" "Too many maybes!" and I spoke my mind. Uh Oh! I can get in trouble when I speak my mind. I was so confused and wanted to know. So I said something like this:
"It doesn't seem like the treatments Terry has had are doing much good. Many of the meds and chemos even cause other side effects or problems that are not pleasant, and who really knows what will happen because of them in the future.
For instance, the Ofa treatments (last year) didn't do any good, the Rituxan (a few months ago) didn't seem to help, and the transplant itself didn't do any good and in fact, brought about another cancer (MDS) that we are fighting with now. The Revlimid is possibly causing problems with his immune system and hasn't proved to be beneficial, so why do we do all of this? What good is coming from all of this?"
Ya, I said that ..., and asked that! I really do understand that medical science is not an exact science. Oh Bother!
The doctor kindly told me that it was a good question and was something to consider. She then proceeded to give us three plan options.
Plan A
Hold the Revlimid (stop taking it) for one month to see if there is any change with his neutrophils.
Plan B
Continue the Revlimid and hold course.
Plan C
Continue Revlimid and add a monthly Rituxan.
After sharing these options she looked at me and raised her hand toward me as if showing a "stop" sign, and said, "We already know how you feel", and then turned to Terry and asked him how he felt. He chose plan A. By the way, her gesture toward me was not given in offense, nor did I take it as offensive. It was just something I personally observed and thought was funny and worth noting here - it brings a chuckle to me, so maybe it will to others who read this. Happy is good!
(I'm sure there was other conversation throughout all of this, but I'm pretty focused on what my mind was thinking and speaking out loud. If I knew Terry's mind I'd probably speak it out load too. smile! )
(I know what you're thinking - "Girls talk too much!" ;) I think I'm proving it!)
It will be interesting to see the blood results next month - I'm hoping for positive change. Oh, counts from this appointment:
WBC = 1.9(L) [normal is 4.5-11.0]
RBC = 4.00(L) [normal is 4.50-5.90]
HCT = 34.3(L) [normal is 41.0-53.0]
Platelet Count = 38(L) [normal is 150-400]
Ab Neutrophils results were not back by the time we met the doctor, but we know they are extremely low if they exist at all.
Okay, one last thing. The doctor said that she will tell SCCA to open the search for an unrelated donor for a second transplant. She said that it could take 6 months to find one, so we need to start now. We'll see what happens. We do have mixed emotions about it all.
And, as we have learned with our past experiences, anything I've just said in this post could be completely changed in the near future. ;)
For now though, this is what we've got!
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1 comment:
Elaine, bless you for being Terrys faithful advocate! Its hard to question the "experts", but sometimes a necessary and good thing. Who knows, maybe some of your questions and concerns will lead to a better decision down the road.
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