I hate this

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.

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 said:

Hello Ken

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 .  Keep up the fight, we know your next scan will show remission.

Thank you again for your kind words,

Becky and Bill

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

Praying for you guys. Thanks for the update.

Sandy

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. ,

illead said:

Update

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 ).  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.

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

.

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.

illead said:

A thank you to all

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

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