Apology
Hello to you all,
I am so sorry that I have been absent from the board for so long, I have been meaning to write and I feel so bad that I haven't done it. We have had a pretty hectic six or seven months and yes Bill relapsed with his mantle cell for about the fifth time. I will try to make this as short as possible. in September Bill started having pain in his right leg, he had recently had a pet scan so we didn't think much of it. It got worse though and finally he couldn't lift his foot, his PCP sent him to a neurologist who sent him to have an MRI which showed about a 4"x 4" mass below his knee on the outside. it ended up being cancer but not identified. At our cancer center they only take petscans from the chest to mid thigh so it totally missed it. His oncologist here said that by the time he could get the tests etc. that was six weeks out. We immediately called MD Anderson and made an appointment with Dr. Wang, he said get here ASAP, we were there the next day. He had the gamut of tests, another pet scan from the top of his head to the bottom of his feet, labs, biopsy, MRI, ultrasound, you name it. The ultrasound showed a blood clot in his leg that was caused by the tumor, so he ended up in emergency and of course was put on blood thinners by injection. We saw Dr. Wang for the results of the tests and of course it was MCL. He put Bill in the hospital there for pain which was now very extreme. They assigned a pain management team on call 24/7 and administered radiation and chemo infusions three times a day for several days, he was there for eight days and was back in remission, we were in Houston for about two weeks. We returned the first week of January for more tests and he had relapsed again. Dr. Wang wanted to put him in a clinical trial for a new car T cell therapy which is less toxic than the original one. More tests for the trial and then we found out he wasn't qualified (A whole different story). Dr. Wang was livid and fought hard with the sponsors of the trial but it was not to be. He told Bill that he had another trial that he wanted to put him on that he thought it would put him into remission long enough for the new one to be released to the public and then he could put him on it. It's called Loxo 305 and he told Bill he would trust that on his own father, so of course we acccepted. So more tests plus physical therapy which needed to be continued from what he was getting at home. The Loxo 305 is two pills daily and it's a BTK inhibitor which is what he was on after his first relapse, Ibrutinib, but doesn't have the side effects. We agreed with Dr. Wang that it should have good results since it never quit working but Bill had to get off of it because he could not tolerate it after over two years. So we ended up being there that round for seven weeks and had only planned on one week. Since this is a clinical trial he has to come back to Houston once a month to get new pills and run the gamut of tests so we came back in March and now we are back again and will leave tomorrow. we learned in March that his pet scan came back "complete metabolic response to therapy." Dr. Wang is very happy and so are we. In a couple months, the trial will become more simplified and we will not have to come every month but we will have to come for his tests, but it will basically be bloodwork and pet scans and those will get stretched out also I'm sure. Oh yes did I mention that when all of this started happening we were smack dab in the middle of a giant kitchen remodel and then seven weeks of totally neglecting our yard etc., plus Bill not able to do what he did before has taken a real toll on us but we only had to be here for four days this time we leave tomorrow and we have almost caught up at home so we can see the light at the end of the tunnel. Last year we celebrated our 50th wedding anniversary quarantined with the pandemic and this year we spent our 51st and MD Anderson. Of course we are not complaining, I remember when Bill was first diagnosed almost 10 years ago, I was so sad to think we would never make it to our 50th. I miss you all but I have been trying to keep up somewhat with the forum and will work hard at doing better.
My best to you all,
Becky and of course Bill
Comments
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So happy to hear from youShadyGuy said:Oh my!
What a journey. Bill is one lucky guy to have you for his wife! Good luck!
If I might ask, why was he denied entry to the CAR-T trial? Was it age? If that is too personal just ignore my question and accept my apologies.
Oh, my dear Becky, I have been thinking of you and Bill. Just last night I searched to find the last time you were at the site. I am currently in another state taking care of my 93 year old mother which is kind of unbelievable. I don't do well typing on my phone so when I get home, I will email you.
Much love
Rocquie
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Phew...
I had been finding you awfully quiet for quite a while and thinking of you, hoping it was nothing more than the disruption caused by the pandemic in all of our lives.
So sorry you had to go through all of that - but so relieved to find that it did take a turn for the better, at long last!
PBL
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Thank you
Thank you so much Shady for your kind words. Rocquie you have always been here for me From the beginning and PBL you have been here also a long time and I appreciate your sound reasoning with so many. I look forward to an email Roquie when you have time, no rush. I get it about your mother I too am helping with my 94-year-old stepmother, we try to visit her every week, but at least she is in the same town as us. Also I get the iPhone dilemma, when I wrote this on my iPad I got it almost completely written and my battery ran out and when I went to find it it was gone so I had to start all over.
In answer to your question Shady it was not because of age, it is because as Jehovah's Witnesses we do not accept blood transfusions. I don't expect you to understand or accept that but it's very important to us. The only way the sponsors of the trial would approve Bill is if he signed a waiver that he would accept one in the very rare case that it was needed. We offered to sign anything legal to absolve them from any responsibility but they would not allow that. Having said that though we do understand their side, they are spending big money for the trial, so why would they allow someone in who is holding a trump card? Once it gets out of the clinical trial, it will not be an issue so that is why Dr. Wang is hoping Bill stays in remission until it is released. There is still the Car T treatment that has been released but it is more toxic. One more thing I forgot to add about Bill's tumor was that it pressed on his nerves and muscles in his leg, so now he has foot drop, but having PT and improving a lot but it's slow.
Thank you again for caring,
Becky
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personal blood bank
Just a thought: my father was a heart surgeon and had Jehovah's Witnesses among his patients. He would arrange for some advance blood to be drawn and stored for those patients so that they could have their own blood transfused back to them during the planned surgery. Since I suppose Bill's own hematologist would be treated him, isn't it possible for him to arrange such an advance storage?
... On second thought, I gues not, as that would probably re-infuse the lymphoma...
Hopefully, the remission will last untill that CAR-T treatment is available to the public!
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We do have Cell salvage
We do have Cell salvage possible also EPO and many other things to build the blood. Actually, when Bill was first diagnosed his RBC was 1.6 and platelets 33. He had EPO shots plus hydration for about two weeks prior to his chemo treatment and he came out of it fine. We do have hospital liaison committee's all over the world that study up and give lectures to doctors etc. in fact they have given them at MDA. Dr. Wang spoke with them here in Houston along with our headquarters in New York. Bill will be getting everything done now in Houston so Dr. Wang will be his oncologist. He is very familiar with the Witnesses and willing to listen. We may as well have the best, he is world renowned and only deals with mantel cell. He is very passionate and we are very fortunate.
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Hello, dear friendsillead said:We do have Cell salvage
We do have Cell salvage possible also EPO and many other things to build the blood. Actually, when Bill was first diagnosed his RBC was 1.6 and platelets 33. He had EPO shots plus hydration for about two weeks prior to his chemo treatment and he came out of it fine. We do have hospital liaison committee's all over the world that study up and give lectures to doctors etc. in fact they have given them at MDA. Dr. Wang spoke with them here in Houston along with our headquarters in New York. Bill will be getting everything done now in Houston so Dr. Wang will be his oncologist. He is very familiar with the Witnesses and willing to listen. We may as well have the best, he is world renowned and only deals with mantel cell. He is very passionate and we are very fortunate.
Becky, I had been thinking of you two for some time, and was about ready to telephone you. I'm glad that Bill's treatments worked. His is a case in which if he were not at one of the world's leading Cancer Centers, he would very probably not be as fortunate as he is, as regards remissions and longevity. A niece was diagnosed about two years ago with Stage 4 colorectal, with metastasis to the breast and sternum. Her prognosis was pretty close to zero, but she has had ten surgeries and numerous curative therapies at MD Anderson, and she is currently in full remission, which is close to unbelievable.
Your last year has been a real trial, obviously. Love you guys, please continue to post,
max
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Blood transfusionsillead said:Thank you
Thank you so much Shady for your kind words. Rocquie you have always been here for me From the beginning and PBL you have been here also a long time and I appreciate your sound reasoning with so many. I look forward to an email Roquie when you have time, no rush. I get it about your mother I too am helping with my 94-year-old stepmother, we try to visit her every week, but at least she is in the same town as us. Also I get the iPhone dilemma, when I wrote this on my iPad I got it almost completely written and my battery ran out and when I went to find it it was gone so I had to start all over.
In answer to your question Shady it was not because of age, it is because as Jehovah's Witnesses we do not accept blood transfusions. I don't expect you to understand or accept that but it's very important to us. The only way the sponsors of the trial would approve Bill is if he signed a waiver that he would accept one in the very rare case that it was needed. We offered to sign anything legal to absolve them from any responsibility but they would not allow that. Having said that though we do understand their side, they are spending big money for the trial, so why would they allow someone in who is holding a trump card? Once it gets out of the clinical trial, it will not be an issue so that is why Dr. Wang is hoping Bill stays in remission until it is released. There is still the Car T treatment that has been released but it is more toxic. One more thing I forgot to add about Bill's tumor was that it pressed on his nerves and muscles in his leg, so now he has foot drop, but having PT and improving a lot but it's slow.
Thank you again for caring,
Becky
Are definitely dangerous but I owe my life to one. I am not versed in the religious aspects but respect your beliefs. Take care and I am so glad to see you back!
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Thank you Max
Thank you dear Max, I knew you would be worried, and I felt so bad not posting, You too have been with us from day one and it has always been a great comfort. You are so right about MDA, it is amazing. Even the hotel we stay at is only for cancer patients, family and caregivers. From the desk clerks to the shuttle drivers, maids etc, they treat you like you're the most important person. Most everyone staying here will share their stories, it is quite unique and everyone understands each other. Dr. Wang told us on our first visit this go round that if Bill's oncologist would have put him on the protocol she had planned he would have been dead in two months. His Ki67 went from 40 to 80 and he said the mantle cell is now very aggressive. He always has something up his sleeve though and says that if this clinical trial doesn't work he has some other things to use to keep him going until Cart T. He is a very dear man on top of being passionate about this disease, it is a real comfort to be in his hands.
Thank you again Max,
Becky and Bill
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Mantleillead said:Thank you Max
Thank you dear Max, I knew you would be worried, and I felt so bad not posting, You too have been with us from day one and it has always been a great comfort. You are so right about MDA, it is amazing. Even the hotel we stay at is only for cancer patients, family and caregivers. From the desk clerks to the shuttle drivers, maids etc, they treat you like you're the most important person. Most everyone staying here will share their stories, it is quite unique and everyone understands each other. Dr. Wang told us on our first visit this go round that if Bill's oncologist would have put him on the protocol she had planned he would have been dead in two months. His Ki67 went from 40 to 80 and he said the mantle cell is now very aggressive. He always has something up his sleeve though and says that if this clinical trial doesn't work he has some other things to use to keep him going until Cart T. He is a very dear man on top of being passionate about this disease, it is a real comfort to be in his hands.
Thank you again Max,
Becky and Bill
When I began chemo in 2009, I met an old friend from a previous job at the infusion center one day. I learned from him and his wife that he had late-stage MCL. I asked my onc at our next meeting if MCL was similiar to what I had, and he said "Oh no; that is a quite different animal." The friend died within a few months.
Thankfully, MCL has had dramatic improvements in treatments and prognosis since then,
max
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two cases
We met two gentlemen while there the 7 weeks at the hotel, who both have MCL and go to Dr. Wang. Steve was full bore in his spine at diagnosis which immediately put him in a wheelchair, he has just had his T cells harvested for Car-T which will be started soon. The other gentleman was diagnosed 11 years ago and immediately went into remission with chemo. He has never relapsed and was there to see Dr. Wang for his once a year check up......go figure. I have heard of the long remission after the 1st chemo but it certainly is rare and we are very thankful that he got it at the time the breakthroughs in research were just beginning.
Becky
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Glad to hear from you
I've been checking the boards on and off and have been so worried about you, so was glad to see an update. I am so sorry you and Bill have had to go through all of this. I wish the pandemic hadn't ruined your 50th anniversary plans. I know how much you were looking forward to celebrating. Just want you to know I think of you often and I'm hoping things are going a little better now. Take care.
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