I hate this
Hi all,
I have been vacillating about telling you guys, I don't know why, but I just figured out I have to write. About 3 weeks ago, we found out that Bill has relapsed. It's not too bad, in his last CT scan they found a few very small nodes where his esopagus meets his stomach. He had been having some bad side effects from the target drug Ibrutinib (severe stomach pains and wobbliness), so the Dr. took him off Ib for 3 mos. The pains subsided somewhat but he still had them intermittently. Now he is back on Ib. If one relapses while on Ib, it will not work again, but the Dr. thinks that since his Jan CT, pet, colonoscopy and endoscopy were all good, that means he was off Ib when he relapsed, so it will work again. I am not so sure, MCL can hide out and I didn't like him off of Ib for so long. He is getting the pains again more tho, so I just don't know. We decided to take our own advice, which is to see an MCL specialist. His onc is very good and caring too, but we feel we need to get an expert in our network. We made an appt. with Dr. Michael Wang at MD Anderson. From my research and hearing first hand from some of his patients he is the top, he actually headed the research for Ib and has many trials going on. So we are not in turmoil, it is what it is, and there is no point in extreme worrying until we have to. We feel good about our decision to see Dr. Wang and so does Bill's onc. We leave on May 24 for Houston and will return on June 3. They like you to stay for 7 to 10 days and he will get more testing there. He will be an outpatient.
So anyway, thanks for listening and sorry it took me so long to tell you, you are such a caring group and I feel comfort as I write. I will keep you informed while we are there.
Always thinking of you,
Becky & Bill
Comments
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Becky and Bill
I am so sorry to hear this news, but thankful you (finally) told us. I understand why you held back for a while; it makes it official. I am sorry you have been feeling bad, Bill. Hopefully in your trip to Houston will find hope and relief. I will be keeping you both in my prayers. And please do keep us up to date.
Hugs and love,
Rocquie
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Just when we thought...
Most of us are not fighters by nature. Rather, we live and let live for the most part. But then, the bully walks into the room and turns toward us. Bill looks like he has quite a bit of fight left in him. Here is hoping for the best.
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Becky
I am so sorry to hear this. I hadn't seen anything from you in a while. Now I understand why, and I can understand why you hate it. I do too!! Hopefully, your doctor is right, and Ibrutinib will work again. You are certainly going to see one of the experts in the field. Let us know the results of your visit to him.....Bev
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Teleabcma said:Becky
I am so sorry to hear this. I hadn't seen anything from you in a while. Now I understand why, and I can understand why you hate it. I do too!! Hopefully, your doctor is right, and Ibrutinib will work again. You are certainly going to see one of the experts in the field. Let us know the results of your visit to him.....Bev
I spoke to our beloved Becky on the phone last night. Her spirit is strong, as always. She has been such an amazing trooper, done so much research, so much caring for Bill.
I feel Bill will be ok. I pray that it is so. I feel like he is my brother, despite never meeting him.
max
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Thank you
We just want to say how much your comments and comfort mean to us. 007 said it perfectly, it's a chapter and that is how we look at it. So we leave on Wed. and will have our first dr visit Thurs, we will keep you posted. Yes Po, Bill is a fighter with a fighter coach
, he'll do fine.Thank you all again and keep up the fight,
Bill & Becky
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I hate this too and MCL more...
I'm sorry to learn this like everyone else here. I trust your husband will be in the very best of care and your research, knowledge, perseverance and strength will pull you through this next chapter. I hope and pray that this will not weaken your resolve and soon all will be well.
Blessings coming your way to you and your husband.
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A Crazy trip
I am sorry I didn't write sooner, We got home last night, and I actually did write twice while we were there and tried several times to resend it but for some reason CSN kept saying it couldn't be sent at the time, to try later, so don't know if it was them or my Ipad. It was very frustrating but I did try. I sure hope this one goes. So here goes, you're not going to believe this. Bill's first appt was Thurs, the 25th. Dr Wang is very personable, and down to earth. He is passionate about finding a cure for MCL. He took one look at Bill, felt his muscles and said "I would like to put you in my Car-t cell therapy clinical trial. It's hard and risky but I know you can do it, you're strong." That is what we were hoping for and he was genuinely excited. What it is in simple terms and probably not exactly correct is they harvest some of the patients T cells and genetically engineer them to produce antigen receptors in a laboratory and multiply them by the millions, then infuse them back into the patient to find and kill the cancer cells, even the ones that notoriously (with MCL) hide out for years. Your medical lesson for the day
So he ordered a pet scan for Friday to see how far along the MCL was which is a qualifyer for the trial. He called Friday nite to say that they didn't have results yet, probably because of Memorial Day on Mon., so he told Bill to come Tues. at 2:00 to see him. Bill told him he didn't have an appt and he said "you don't need one, just tell them I told you to come" It was a very long weekend. We get to the lymphoma center and it was packed out, barely any seats , (I would say over 100 patients). When the nurse called Bill in he told us there were no rooms available so we would have to see Dr Wang in his office. The office was about the size of large bathroom with at least 5 others on his staff cramped together working on their comps. Dr Wang was in the corner and he turned around and said "I have good news, you are in complete remission" 
. We were shocked! Bill started asking how could that be etc. and he finally said, "Let's go see if we can find a room for more privacy". He found one, but we didn't have much time because someone came to claim it. It was kind of a fiasco. We couldn't discuss anything, and he was obviously very busy. The only thing we got at that point was to come back in 2 months for another pet, colonoscopy, upper G I, BMB and labs of course, and for Bill to stay on the drug. So we were kind of in a daze. Come back in 2 mos. means we fly from Sac to Houston and get a hotel for at least 5 days, (not exactly cheap). His regular onc here took him off the target drug for 3 mos because of the severe side effects (wobbliness, causing him to fall several times, and very bad stomach pains like nails going through his stomach), then had the catscan that showed the nodes in his stomach at his esophogus which stated it was probably MCL. So the onc put him back on the drug which was a month before the pet. All we can figure is that either it was not MCL at all or the drug killed it. We were so excited for the trial that oddly we were initially a little down and especially since it would mean having the side effects. Is that kind of like you're damned if you do and damned if you don't? 
. After readjusting our thinking, we of course are very thankful that he is in remission again and time can only mean more progress and improvement in the trials. Also Dr Wang lessened his dosage of the drug by 1/4 and that seems to be helping a lot. So of course thank you all for your concern, support and prayers. We both apprecate you all so much.Becky & Bill
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I hate thisillead said:A Crazy trip
I am sorry I didn't write sooner, We got home last night, and I actually did write twice while we were there and tried several times to resend it but for some reason CSN kept saying it couldn't be sent at the time, to try later, so don't know if it was them or my Ipad. It was very frustrating but I did try. I sure hope this one goes. So here goes, you're not going to believe this. Bill's first appt was Thurs, the 25th. Dr Wang is very personable, and down to earth. He is passionate about finding a cure for MCL. He took one look at Bill, felt his muscles and said "I would like to put you in my Car-t cell therapy clinical trial. It's hard and risky but I know you can do it, you're strong." That is what we were hoping for and he was genuinely excited. What it is in simple terms and probably not exactly correct is they harvest some of the patients T cells and genetically engineer them to produce antigen receptors in a laboratory and multiply them by the millions, then infuse them back into the patient to find and kill the cancer cells, even the ones that notoriously (with MCL) hide out for years. Your medical lesson for the day
So he ordered a pet scan for Friday to see how far along the MCL was which is a qualifyer for the trial. He called Friday nite to say that they didn't have results yet, probably because of Memorial Day on Mon., so he told Bill to come Tues. at 2:00 to see him. Bill told him he didn't have an appt and he said "you don't need one, just tell them I told you to come" It was a very long weekend. We get to the lymphoma center and it was packed out, barely any seats , (I would say over 100 patients). When the nurse called Bill in he told us there were no rooms available so we would have to see Dr Wang in his office. The office was about the size of large bathroom with at least 5 others on his staff cramped together working on their comps. Dr Wang was in the corner and he turned around and said "I have good news, you are in complete remission" . We were shocked! Bill started asking how could that be etc. and he finally said, "Let's go see if we can find a room for more privacy". He found one, but we didn't have much time because someone came to claim it. It was kind of a fiasco. We couldn't discuss anything, and he was obviously very busy. The only thing we got at that point was to come back in 2 months for another pet, colonoscopy, upper G I, BMB and labs of course, and for Bill to stay on the drug. So we were kind of in a daze. Come back in 2 mos. means we fly from Sac to Houston and get a hotel for at least 5 days, (not exactly cheap). His regular onc here took him off the target drug for 3 mos because of the severe side effects (wobbliness, causing him to fall several times, and very bad stomach pains like nails going through his stomach), then had the catscan that showed the nodes in his stomach at his esophogus which stated it was probably MCL. So the onc put him back on the drug which was a month before the pet. All we can figure is that either it was not MCL at all or the drug killed it. We were so excited for the trial that oddly we were initially a little down and especially since it would mean having the side effects. Is that kind of like you're damned if you do and damned if you don't? . After readjusting our thinking, we of course are very thankful that he is in remission again and time can only mean more progress and improvement in the trials. Also Dr Wang lessened his dosage of the drug by 1/4 and that seems to be helping a lot. So of course thank you all for your concern, support and prayers. We both apprecate you all so much.Becky & Bill
"Remission" is such a great word to hear!! Glad that Bill is tolerating the drug without as many side effects. I'm so happy for both of you!
Bev
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Gotta be
It's gotta be that healthy northern California cookin you've been feeding him, Becky !
max
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