I hate this

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

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

Sorry for the new. Thanks for letting us know so we can be parying for you.

in this difficult time

Steve

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.

illead 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

It's gotta be that healthy northern California cookin you've been feeding him, Becky !

max

I was in absolute JOY reading your post. What WONFERFUL news, thrilled that Bill is in remission.

Blessing to you, Bill and your family.