Information About Treating Symptoms

 My boyfriend, Allen, a 54 yo, has recently been diagnosed with mantle cell.  This nightmare started in September of last year, when he was hospitalized the first time for nausea and dizziness, and subsequently treated for fluid on the inner ear.  In early October, I rushed to his house in the middle of the night after he called to tell me he thought he was dying...that he was having chest pain and difficulty breathing.  (He needed me to stay with his 5 yo granddaughter and 11 yo daughter, both of whom live with him, before the ambulance arrived.)

A CT scan showed something suspicious in his right lung, but his heart was the most immediate concern, so he was sent for a heart cath the end of October.  He had a triple by-pass the next day.  A biopsy of a lymph node in his lung was finally done a few weeks ago which showed mantle cell.  A bone marrow biopsy was done Monday to determine the stage.  From everything I've read, I fear he is already in Stage IV.  He has had abdominable discomfort for awhile, and extreme fatigue, and feelings of nausea.  (I'm so grateful he has not lost his appetite.)  Oh yes, he also has blood clots in his lung and both legs which we have been told is because of the lymphoma.

By far, the worst symptom, besides the fatigue, is severe itching - on his back, arms, chest and scalp.  We have tried everything but nothing has provided much relief.  Benadryl caps and topical jel have helped a little, but he still has the "rash".  If anyone has a remedy for this, please let me know.

Allen was supposed to get his port on Monday, but it had to be postponed because his blood was too thin from the bloodthinners, so we're back to the hospital on Thursday.  We're live in a rural area about 1 1/2 hours away.  He's being treated at Massey Cancer Center, located at MCV, a teaching hospital in Richmond, which I call "Miracle College of Virginia".

I am no stranger to this hateful thing called cancer.  I've lost a grandfather and uncle to lung cancer...and it took my father, bit by bit, over a period of about 35 years.  He spent the last 6 years of his life on a feeding tube resulting from cancer which started in his salivary gland, and required and radical neck dissection.  Even so, the quality of his life was very good except for the last few months of his life...after the cancer showed up in his lungs.  He was 79 yo., my best friend, and my hero...but he was tired and ready to move on.

Dealing with this mantle cell thing seems to be so much harder for me...I guess because of the prognosis.  When the doctor said "six months" without chemo, and maybe  3 years with it, I felt like I'd been punched in the gut.  Everything has just happened so fast...and he has so many responsibilities (children, 83 yo mother, farm with cattle & hogs), and is too sick to take care of even himself.

I live with my disabled mother, whom I care for, and it's hard trying to be in two places at once!  But I know God will make a way.

Allen and I have decided that we're not going to worry about this...that we're going to take one day at a time, hope for the best and prepare for the worst...and pray, pray, pray.

May God bless all of you - patients, family and friends.  All of you are on my prayer list...and all of you are heros. 

When the doctor said "six months" without chemo, and maybe  3 years with it....

Take heart... new medicine has seen this number move out to 6 years. It is important that he achieves remission to slow the progress of the disease.

There are several new drugs in the pipeline that may eventually result in MCL becoming a chronic disease.

I am 41 now, in remission after 9 cycles of R CHOP. I was also not in great shape when I was diagnosed, are are now in remission and fairing well so far.

Chemo is tough, and many side infections happen because of it. I have an ear infection since August last year now - I try to cope by keeping it warm, nursing it. Twice a simple hair follicle infection became absesses.

It is important to protect him from people with flu etc. and also to be good to his body. Rest. Focus on getting better. The months will pass...

Suzan 

On 3/19/2007 Suzanjhb wrote:

When the doctor said "six months" without chemo, and maybe  3 years with it....

Take heart... new medicine has seen this number move out to 6 years. It is important that he achieves remission to slow the progress of the disease.

There are several new drugs in the pipeline that may eventually result in MCL becoming a chronic disease.

I am 41 now, in remission after 9 cycles of R CHOP. I was also not in great shape when I was diagnosed, are are now in remission and fairing well so far.

Chemo is tough, and many side infections happen because of it. I have an ear infection since August last year now - I try to cope by keeping it warm, nursing it. Twice a simple hair follicle infection became absesses.

It is important to protect him from people with flu etc. and also to be good to his body. Rest. Focus on getting better. The months will pass...

Suzan 

Dear Suzan,

Thanks so very much for your message of hope.  I can't wait to share it with Allen.  He says he is not afraid to die, has "decided not to worry about this", and is ready to accept whatever God has in store for him.  But I know this has got to weigh on his mind even more than it does mine.  He is the realist in our relationship...and I'm the optimist...not a bad combo under the circumstances!

He will be getting his second round of R-Chop on the 28th.  He's done very well so far...except the itching came back as soon as he finished the five days of Prednisone.  (We've tried everything from Benadryl to Vinegar.)  It gets worse if he gets sweaty, so he's trying to keep cool.  After this next round, they'll do some CT Scans.

I've read that someone has recently donated millions just to research MCL, so I'm just praying that Allen, you and so many others can hang in there.  Allen's oncologist told us that there is alot of research going on, and not to give up hope.

I can't tell you how much it has helped me to hear from you.  I will keep you in my prayers, and hope you soon find relief from the problems with your ear.

Let's keep in touch, ok? 

Auddie,

I was a 50 yr old female in 1/06 when I was diagnosed with stage iv MCL. I was also told to read the prognosis (my onc wouldn't even say how long) Anyway after the biopsy, a PT Scan, PET Scan, I went through 6 rounds of R-CHOP, followed by full remission. Had my Stem Cell Transplant last October, and have just finished my first yr of maintenance Rituxan.

We live in Fredericksburg.

By the way I had my Transplant at MCV with Dr.s Chung and his partner, can't remember his name . They are the head of the cancer department. I was told most MCL patients are diagnosed at stage iv. At first glance the prognosis doesn't seem very good, but don't read too much on he internet, you worry yourself to death. Going through chemo, your BF might need some help in the house with all the child responsibilites he has. I didn't get sick at any time during the chemo, just darn tired.

Please feel free to email me with any questions. I do pray your BF handles everything a day at a time.

God Bless you all,

Kathy  :)