As one gets older, it seems that the passing of the year goes by faster and faster, doesn't it? My wife and I stayed home. The weather being wet and cold, the noise level for the celebration in the neighborhood was a bit subdued this year, though that isn't anything I'm complaining about.
I have been having some increase in symptoms the last week. I've had a couple of days of feeling pretty full, which must mean the nodes are growing again. So, nine months after the end of my eight months of treatment with flavopiridol, I am going to need more treatment.
I did go to Stanford and met with Dr. Coutre regarding a CAL-101 trial, this time with rituximab. That was in September. One concern I had was having a CT scan as part of the trial, which I won't do unless I'm in immediate danger of dying. He assured me that he could substitute an MRI, which is less dangerous for the patient.
Well, since then I did sign up for the trail, but the trial coordinator, Michelle, said the MRI is off the table. She did want me to do the three-hour drive to meet with Dr. Coutre again, but I told her I'd like to avoid that if possible. I was down there just a couple of months ago.
She was inflexible, and said she talked with Dr. Coutre, and that he has changed his mind, or perhaps the drug company is now inflexible about the scanning. Too bad. I told her to give up my space on the trial to someone who doesn't mind being irradiated with a lifetime's worth of radiation.
So, I have to resign myself to not trying one of the new 'great' drugs. And of course it will be another four or five years before the drug is approved, if it is.
I wish I had not placed my hopes in CAL-101. (Besides, the response rate is only about 50% anyway, so it may not have even worked. And that I would have had a series of CT scans?)
Case report: regression of MGUS with long-term use of curcumin!
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I wonder if these case reports will ever catch the eye of our MM
organisations, which, unfortunately, are so heavily sponsored by big
Pharma…Doubtful… 😕 ...
3 weeks ago
3 comments:
With all due respect, I think that you should carefully reconsider your position.
To date your disease has caused you a good deal of difficulty and it appears very likely that it will soon be doing so again.
The treatments that you have already undergone have caused much more discomfort than you would likely experience with CAL-101 and rituximab (though there are never any guarantees).
This is NOT a contest of wills between you and those conducting the trial...they have criteria that must be met for them to properly conduct their trial as planned.
With no therapy there is a good chance that your disease will progress and that you will suffer significant morbidity and or death in a time frame much shorter than any theoretical problems due to radiation from CT scans.
I agree that there are no guarantees and also agree that no one should undergo unnecessary CT scans, BUT I personally feel that the risk is a great deal less than you seem to believe and in this circumstance (I believe) the upside of your entry into the study (CT scans and all!) far exceeds the potential downside.
In any case, if you fail to respond to the CAL-101 and rituximab you can always drop out of the study and then you will not need to undergo further CT scans.
Good Luck,
11qRick
Hi...I was wondering if you would be open for some email communication rather than through here. I've been following your journey, and I'd like to tell you about my dad's. He'll be 52 next month, diagnosed with CLL when he was 44.
If interested...smw7676@gmail.com
Thanks much...
to 11qRick:
I understand your viewpoint. However, I am seeing Dr. Kipps every month. I have an appointment in late January.
He doesn't feel I need treatment at this time. When I do, I might consider something that is available outside of a trial, i.e. revlimid + rituximab.
I just don't want to make my CLL 'angry' with another CT scan, and I don't want to do well on these latest CLL drugs, just to develop another cancer because of the CT scans, and kick the bucket while my CLL friends are basking in a new lease on life.
Just how I feel.
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