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illead's picture
illead
Posts: 836
Joined: Aug 2012

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

 

lindary's picture
lindary
Posts: 641
Joined: Mar 2015

and best wishes.

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

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

 

po18guy
Posts: 991
Joined: Nov 2011

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.

abcma
Posts: 24
Joined: Aug 2006

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

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

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

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

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

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's picture
illead
Posts: 836
Joined: Aug 2012

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 Wink,  he'll do fine.

Thank you all again and keep up the fight,

Bill & Becky

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

in this difficult time

Steve

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

I wanted to let you know that I am still praying for you and sending lots of virtual hugs!

Love,

Rocquie

 

illead's picture
illead
Posts: 836
Joined: Aug 2012

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 Laughing 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" Surprised.  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? Undecided.  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

abcma
Posts: 24
Joined: Aug 2006

"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

ShadyGuy
Posts: 386
Joined: Jan 2017

Wonderful!!!

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

This is great news, prayers and good thoughts to you both!

ceili
Posts: 15
Joined: Jan 2017

So happy to hear! Finally some good newsSmile

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

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

max

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Glad to hear! Have my PET scan Thursday and results Tuesday and treatment 5 scheduled same day.

Hope I can report the same. Would be lying if I said I am not a little anxious to hear those words.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

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

Blessing to you, Bill and your family.

Simon24
Posts: 43
Joined: Oct 2015

We are so happy to hear your good news and wish you both the very best.        Simone and Al

illead's picture
illead
Posts: 836
Joined: Aug 2012

We appreciate all the nice comments, it is so strengthening to know you are there, onward we all go.

Becky & Bill

lindary's picture
lindary
Posts: 641
Joined: Mar 2015

What a roller coaster of medical stuff. After all of that to be told Bill is in remission. Guess you can't ask for a better ride than that. I hope the good news keeps coming for both of you.

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

I love success stories like this. I'm so happy for you guys!!

Landrys Dad
Posts: 2
Joined: May 2017

Hello Becky and Bill

My name is Ken and i too was diagnosed with MCL in Jan 2012 at the age of 47. I went thru 6 rounds of R-hypercvad and was in complete remission for exactly 4 years. After relapsed, started on Revlamid and Rituxin but only had a partial response that lasted one year exactly. Since March of this year I have been on Ibrutinib. After only 6 weeks on it had a pet scan that showed nearly complete remission, I hope that with my next scan ill be in complete remission, this drug is amazing with the only side effects being some fatigue. Just wanted to let you know that reading how well Ibrutinib has worked for Bill, and for this long has been very encouraging. Thank you and hang in there I truely know what your feeling and am so glad to hear that he is doing so well. 

 

illead's picture
illead
Posts: 836
Joined: Aug 2012

We love hearing news like yours, thank you so much for writing.  Yes, Ibrutinib is amazing.  Bill has been on it since April '14.  He is experiencing some side effects which started about 8 mos ago, which you have probably read about in this thread, but it is keeping him alive and not everyone has side effects.  It seems like you have a pretty knowledgeable onc. to have used Revlamid and now Ib.  If you ever feel you need a 2nd opinion Dr Wang at MD Anderson is tops, you probably know that already Wink.  Keep up the fight, we know your next scan will show remission.

Thank you again for your kind words,

Becky and Bill

Landrys Dad
Posts: 2
Joined: May 2017

Im sorry

to hear Bill is still having side effects from the Ibrutinib, did reducing the doseage help at all? There is a new BTK inhibitor in the pipeline very much like Ibrutinib but is supposed to have a lot less side effects called Acalabrutinib  in early phase trials (NCT02029443) There is also a very new drug that is being developed to overcome Ibrutinib resistance ARQ531. My first line of treatment was R-hypercvad, it was developed by Dr Romegeura from MD Anderson. I went to MD Anderson for a second opinion, scans and bone marrow biopsy in 2012. I spoke with Dr Wang last March about getting into the Kite pharma CAR-Tcell trial but have to fail Ibrutinib first to qualify for it. Its kind of crazy but the Revlamid was supposed to have very few side effects, but I did not do well on it even  developed shingles and a lot of bone pain and having to go off of it for nearly a month, but the Ibrutinib is supposed to have a lot of side effects but Im not really having any of them yet. Anyway its really nice to talk to someone that understands what Im going through because your going through it as well.

Take care and know Im fighting with you both.

Ken

illead's picture
illead
Posts: 836
Joined: Aug 2012

Hi again,

     I'm posting on this thread again so I don't have to repeat myself too much.  I have been intending on posting a lot sooner but it seems almost every day has been difficult.  First off, Bill is fine ( kind of ).  We got back from our 2nd trip to MD Anderson 2 weeks ago Sat.  In 3 days he had labs, bone marrow biopsy, colonoscopy/upper GI, and a pet/ct, then a visit with Dr. Wang.  His MCL has relapsed again and he has put Bill on a new regimen that his Dr. here is monitoring.  We were home a week before we really knew what it all was, (Dr. Wang had his team with him but rattled off the regimen so fast and with his accent, we weren't sure Laughing).  So that was one reason for waiting to post.  He had his first chemo a week ago.  He is getting the drug Revlimid 1 pill/day and for 4 weeks he has rituxan infusions, and a shot in his stomach of Velcade.  After the 4 weeks he will continue with the Revlimid and Velcade and back to Houston in 2 months. Last Tues with his first infusion, he reacted to the rituxan which is not uncommon.  He had extreme rigors, they called his Dr. into the infusion room and he ordered demoral but they didn't go away so he ordered another dose which lowered his BP so much that he couldn't go on with the rituxan, so they rescheduled him for Thurs.  He did get the Velcade shot however.  He woke up Wed morning and felt great.  He hadn't felt that good in at least 3 mos, it was crazy.  Then back for the rituxan on Thurs. which he tolerated okay, but he came home wiped out and he had a fever all weekend, which I kept down with tylenol and cool cloths, but it was nerve wracking.  Sunday he just didn't look right, very pastey and his voice was shallow (like his condition  when he was  first diagnosed). I called the on call onc at the cancer center and he said to take him to urgent care.  That took about 4 hours but they did labs, urine sample and chest x-ray and no infection.  Fever is a side effect of rituxan.  His labs though showed his WBC 2.4 and platelets are 53, thus his feeling like a worn out rag.  His Dr. had him go ahead with his infusion and shot today and he made it fine, but he is still totally fatigued.  I am feeling better though and less worried, and hoping his blood counts come back up and that he will start to feel better.  Now we know what "getting cancer all over again" feels like.  Dr Wang is very sure that this regimen will put him in remission again, but now the clinical trial has been put on temporary hold but Dr Wang is sure that by the time we go back to Houston it will be back on.....I forgot to tell you that before we went to Houston, Bill could barely get out of bed because of the Ibrutinib side effects.  He called Dr. Wang's nurse and Dr. Wang had him stop taking it.  So thank you all for your continued support, I always know we have it and it means so much.

We all have a battle, may we all continue to fight,

Becky

Ken, I realized I didn't answer your last post.  It is the Kite Pharma trial that has been put on hold, and I just read on the Lymphoma Society that the FDA has moved forward on Acalabrutinib now looking to be released March '18.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Becky,

I'm very sadden by this continuing ordeal, but thankful that Bill is being treated by the world's best, and that these newer drugs are full of promise. You have been his saint for so long.  I noticed you had not written for a time, and had been hoping things had transpired differently than this.  It is all a mystery, all for a reason.   Bill aint goin nowhere, cause if he did, we would be like Dorothy at the end of The Wizard of Oz, speaking to Scarcrow: We'd miss him most of all.

Praying for you two,

max

.

abcma
Posts: 24
Joined: Aug 2006

I am so sorry to hear this.  You have been so helpful to me and to so many others.  There is no question that you have been Bill's fierce advocate through all of this, and in addition you have unselfishly reached out to others who needed help and reassurance.  YOu have certainly helped me.

 

I will pray that all goes well with Bill.  He is in good hands.  He has both you and Dr. Wang in his corner.

Bev

 

 

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Praying for you guys. Thanks for the update.

Sandy

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

Dear Becky, I am so sorry to hear all that Bill has been going through. And I honor you as his loving wife and caregiver. 

I regularly attend a support group which includes a few people with multiple myleoma. They talk about taking Revlamid and Velcade and it seems both those drugs are well tolerated. It seems they are just now being used for lymphomas, with great promise.  My own doctor has suggested if I need to go on treatment again, he will recommend Revlamid. I hope they work quickly for Bill and get him back into remission withought tough side-effects.

Thank you for the update, my friend. You and Bill will be in my thoughts and prayers.

Much love,

Rocquie

 

po18guy
Posts: 991
Joined: Nov 2011

Just wondering, since MCL can be either indolent or aggressive. I do not know if the trial regimen I received (TREC) was employed against MCL, but Dr. Wang should know. It consists of Bendamustine, Rituxan, Etoposide and Carboplatin. It was intended for B-Cell Lymphomas, to replace the horrid salvage regimen of ICE, which is just plain icky and requires hospitalization. My case is a universe apart from Bill's, but I had two sub-types of aggressive T-Cell Lymphoma at stage IV (two dozen tumors and small intestine involvement). TREC (minus the Rituxan) absolutely whacked the lymphoma in two infusions. Gone. Dr. was amazed. It is worth asking about, whether Bill is considering transplant or not. ,

PBL
Posts: 182
Joined: Jul 2016

Thank you for your update. I have been keeping you and Bill in my thoughts. Glad to see you are both doing (about) as well as can be expected. Will keep hoping to read even better news soon.

PBL

ShadyGuy
Posts: 386
Joined: Jan 2017

Glad you were pleased with your visit to MD Anderson. My time there was not so good. I found the place hectic with everyone rushing around through crowded rooms and what seemed to me like mass confusion. Kinda like going to Grand Central Station at rush hour. I would not go back except as a last resort.

lindary's picture
lindary
Posts: 641
Joined: Mar 2015

What a roller coaster of ups and downs the 2 of you have been on. I pray things settle down and all goes weel for Bill, and you.

PO

I like your description of ICE. At the time I didn't think it was that bad. It wasn't until after the SCT was cancelled and I was working on getting back to "normal" that I realized how much it had affected me. The almost 4 days I spent in the hospital getting the treatment I did very little walking. I walked around in the room but I should have been taking walks in the ahllway for like 20-30 mins several times a day.

I know that fatique is just part of things but I had trouble walking any distance, sleeping and concentrating. Neck, back & shoulders were also hurting. My daughter who is a massage therapist recommended massage for the lower back & shoulders. I started getting massage in June '16, not from my dtr because she doesn't live nearby. After about 6 weeks I was amazed how much better I felt. This year I started with a different massage therapist and we are targeting some areas that still just didn't feel right. I am able to walk, taking long strides, the back/neck/shoulders hardly bother me unless I spend a lot of time with work. 

Yep. R-CHOP was a piece of cake compared to RICE.

illead's picture
illead
Posts: 836
Joined: Aug 2012

Hi Again,

I just wanted to thank you all for your kind words and comments as always, they give us both comfort.  I also wanted to update you a little. Bill had his 2nd Rit infusion Tues and tolerated it well.  He is not having fevers anymore so that is good but he is still extremely fatigued.  His counts are still very low so I am pretty sure that is the reason.  Another good thing tho is that his platelets were at 80, up from 53.  That was a big relief.  We are horrified to see what Hurricane Harvey has done.  MD Anderson has been closed to appts. and outpatients since Sat but the hospital is still in operation.  The underground parking was flooded and a little water on the main floor .  They installed floodgates after their last flood and also submarine hatches, so they are pretty well sealed.  They have a team in place to care for the patients and the doctors try their best to get in and out for their patients and to relieve the team.  We are scheduled to go back Nov 11 but don't think that is going to be possible.  When things settle down, we will inquire.  Bill is scheduled for a pet but if he is not going into the trial yet maybe he can just have it here.  We will see how that works out.  Hope none of you are affected as I don't know if any are in that area.  It is so sad.  Thank you Po, I will ask Dr Wang about TREC whenever we see him.  Yes, you are right Shady, MD is one busy place.  We have dubbed it the medical Disneyland. Checkout Texas Medical Center on Wikipedia, it's amazing.  We never had any problem though, we stay at a hotel with a free shuttle and the lymphoma center is just 2 turns to the right and up the elevator from the front entrance.  Whenever you need to go to another place everyone is more than willing to help you and sometimes even walk you there.  So Bill has 2 more Rit infusions then it will  just be the Velcade shot once /wk and Rev pill everyday.  I am thinking that once the infusions are done he will start feeling better....hope so.

Thank you all again,

Becky

abcma
Posts: 24
Joined: Aug 2006

Thanks for the update, Becky.  Glad to hear that Bill is feeling somewhat better.  I'm am praying for his continued improvement.  You are both in my thoughts.

Bev

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

I'm glad things have stabalized for Bill and that the Rituxan is no longer problematic for him, Becky.

My cousin is a retired oncology nurse, now living in Tyler, Texas, which is roughly due east of Dallas, toward the Louisiana border.  I spoke with her a few days after the hurricane, and she said that they had had NO RAIN at her place. Amazing. I don't thiink they ever lost electricity.   They were outside the rain bands as the storm moved in, and then stalled.

So strange, how hit or miss this stuff is. I was in Charleston in 1989 for Hugo. When it is bad, it is bad. But Hugo did not stall, it raced past Charlotte and all the way into Ohio within two days or so as I recall. Hugo passed my parent's house at about 1:00 AM.  At sunrise, the sky was cloudless, with no breeze. But it was horribly humid, which made dealing with 11 days with no power challanging.  Now Irma is expected to get to the US coast by next week, anywhere from Miami to way up the east coast, or possibly never hitting the US mainland.   We'll see.  My brother is in Charleston, but very accustomed to thses things.

I'm sure Bill will get to Houston as soon as it is important to do so.  The Houston mayor says the city is "Open for Business." Hopefully that does not also mean open for looters and contractor con artists.

max

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I am so sorry to read this, I have been away and just now catching up.  This is heart wrenching and what a rollercoaster you both have been on.  I hope that this chapter is swift and successful with outstanding results.  No doubt you must get confidence in his doctor, being at the best cancer treatment center there is and having an outpouring of support.  I hope this eases the path your both on, it's never easy.

I look forward to Bill's recovery and his feeling of restored Heath as the treatment succeeds.

Blessings.

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