Stem Cell Transplant For Mcl?

My husband (48) was diagnosed with MCL in January 2007, he went in for a routine physical, Dr found his spleen to be enlarged, ordered blood work and Bone Marrow Biopsy followed. Tests revealed MCL. He has undergone 6 rounds of CHOP+R, PET scan show no signs of cancer, is getting Bone Marrow Bopsy again, Onx., suggests Stem Cell Transplant while in remission. Is this the best way to go? Are there other options? Onx, feels that this is the best line of treatment at this time. If anyone has any info or experience with this type of situation, I would appreciate hearing from you. As you can imagine this is a very scary time for us.

On 6/18/2007 Copatty wrote:

My husband (48) was diagnosed with MCL in January 2007, he went in for a routine physical, Dr found his spleen to be enlarged, ordered blood work and Bone Marrow Biopsy followed. Tests revealed MCL. He has undergone 6 rounds of CHOP+R, PET scan show no signs of cancer, is getting Bone Marrow Bopsy again, Onx., suggests Stem Cell Transplant while in remission. Is this the best way to go? Are there other options? Onx, feels that this is the best line of treatment at this time. If anyone has any info or experience with this type of situation, I would appreciate hearing from you. As you can imagine this is a very scary time for us.

I was diagnosed with MCL in 2/06. Went through the R-CHOP also.After treatment PET scan showed complete remission. Onc suggested Stem Cell Transplant. I was able to use my own stem cells. It took me 5 days to retrieve them but not a big deal. Not knowing anything about it I was reserved. After Apheressis I was admitted to the hospital, at which I stayed for 21 days. I had 2 or 3 days of full body irradiation,twice a day. Then 2 days of high powered very intense chemo. I felt fine through the whole thing. They give you meds to combat mouth and throat sores. (some people get it so bad they can't eat. I got nothing other than not being able to taste the food). That was me. Then after a day of reat after the iradiation and chemo, they give the transplant or replacement of stem cells. Non-eventful. They give anti nausea meds and alot of Benedryl. I think I slept through the most of the day. You must be very careful about everything. They let me keep my acrylic nails on and I must have had something under them. I scratched my eye after touching something else and ended up with a Herpes virus. Huge black eye, got a spot under my arm. Things are much exaggerated when you get a virus.

If you go in healthy, chances are your transplant will be uneventful. I was able to go back to my house after only a week out of hospital. We lived 51 miles from it so we did have to go back once or twice a week for continued monitoring, ie bloodwork and seeing the doc. Every visit when you are released is a payable visit. We have BC/BS but still had to pay each time I saw the doctor.

Please feel free to email me or reply to this post. I'd be happy to talk!

Take care,

Kathy  :)

I am a 52 year old female so 51 at the time.

Dear Kathy

My husband (52 years old and otherwise fit) was diagnosed with MCL on New Years Eve -we live in Belgium where, I must say, medical care and drug-availability is excellent. Not really the start to the New Year we'd been expecting though! Other than swollen lymph nodes on his neck and night sweats he'd had no other problems. He is at stage IV with bone marrow and digestive tract affected. He is receiving R-CHOP x 6 - every 21 days (yesterday was session number 3 and so far so good, although he has regular problems with low white cell count and the pains are not nice, we're managing and keeping positive). The plan for him is also to receive a transplant of his own cells at the end of the chemotherapy, so I was particularly interested to hear about your experience of the transplant procedure. I know that one persons experience has nothing to do with anothers but you seem to have passed this cap in relatively "positive mode" from the tone of your mail. Must admit this part of the procedure is the one that's scaring us the most. If you feel like giving any more details about the way this treatment was given and how you coped I would be very grateful.

Could I also ask you what treatment you are receiving now?

In the meantime I wish you the best of luck

Debbie

On 2/28/2008 deb1211 wrote:

 

Dear Kathy

My husband (52 years old and otherwise fit) was diagnosed with MCL on New Years Eve -we live in Belgium where, I must say, medical care and drug-availability is excellent. Not really the start to the New Year we'd been expecting though! Other than swollen lymph nodes on his neck and night sweats he'd had no other problems. He is at stage IV with bone marrow and digestive tract affected. He is receiving R-CHOP x 6 - every 21 days (yesterday was session number 3 and so far so good, although he has regular problems with low white cell count and the pains are not nice, we're managing and keeping positive). The plan for him is also to receive a transplant of his own cells at the end of the chemotherapy, so I was particularly interested to hear about your experience of the transplant procedure. I know that one persons experience has nothing to do with anothers but you seem to have passed this cap in relatively "positive mode" from the tone of your mail. Must admit this part of the procedure is the one that's scaring us the most. If you feel like giving any more details about the way this treatment was given and how you coped I would be very grateful.

Could I also ask you what treatment you are receiving now?

In the meantime I wish you the best of luck

Debbie

Hi Debbie,

So glad to hear that your husband has responded to the treatment. To begin with, I also had no sign of illness except for the swollen glands under my jaw. I actually had them for 3 months before doing anything. No weight loss or gain, no night sweats etc. . I responded immediately to my R-CHOP also. My spleen had decresed by 1/2 to normal size. My mid treatment scans were all clear. I had minimal marrow involvement.

So after finishing the chemo in July 06, I went in for the APHERESSIS (gathering my blood for stem cells) in October. By mid October they had a bed for me and I was admitted to MCV (medical college of Virginia) for transplant. I had 3 days of twice a day full body radtiation, followed by two days of heavy chemo, rest 1 day then the "transplant" ( non eventful replacement of your own cells). They put me on all kinds of ANTI-meds. Anti-viral, anti-this and anti-that. Zofran for nausea etc. They do warn that you may get horrendous mouth sores, so bad that you may not want to eat or drink. PRAISE GOD that did not happen to me, although I could not taste anything for a couple weeks. They encourage us to walk around the floor.( the more you sit in bed the better chances for bed sores) I had to have an air mattress because I developed MRSA, I had a sore at the tailbone. A sore there, a sore on the side of my eye, which made it look like I was punched in the eye, and a sore under my arm. Most people don' t get these.

The whole event was non-eventful. My trial came after being released from the hospital. I was on at least 9 meds, as it was making me so sick. I would vomit all day long.. We lived an hour away from the hospital, so everytime I got sick my husband had to drive me back for IV fluids and anti nausea meds. I lost 30 lbs. My husband made me walk around the block. I just couldn't eat...I tried but I didn't want it.

I know this sounds terrible but it's not like this for everyone. Back up a bit. I was out of the hospital in 21 days, feeling good. The sick stuff came while in the Hospitality House. (since we lived so far away, and they need to do bloodwork etc., for a couple weeks) I was home before Thanksgiving. Making frequent trips back and forth to the hospital. After about my 60th day post transplant my husband told the doctor that I needed to QUIT the meds, well almost all of them, and I GOT BETTER! I slept all the time, but most of that was because I was on alot of pain meds.

FAST FORWARD; I am in a two year maintenence program. I go every 6 months for 1 day a week for 4 weeks in a row, for RITUXIMAB (which was also one of my protocal meds during CHEMO. I go in a couple of weeks to start my 3rd segment. I have been "CANCER FREE" since half way through chemo in 06. So it has been 16 months since TP and I am well even though I HAVE GAINED the 30 pounds back  :)

Hope this helps, feel free to email me, not sure if I can leave my email addy, but write back here and I'll write back.

The doctors can only tell you what they see in transplant patients. It is not bad at all!

God Bless,

Kathy  :)    please write me.

Kathy hello again

Up-date, My husband is now on chemotherapy number 6. After chemo number 4 he had a bone marrow biopsy, PET and CAT scan and blood test (bigger test than normal). The good news is that the bone marrow biopsy and scans show zero cancer. However his blood test shows that there is still cancer there. Can I ask you, if you remember, when your tests came back showing zero cancer did that include in the blood?

Also can I ask you if you continue to receive any treatment now?

Hope all is well with you, take care

Debbie 

On 4/21/2008 deb1211 wrote:

Kathy hello again

Up-date, My husband is now on chemotherapy number 6. After chemo number 4 he had a bone marrow biopsy, PET and CAT scan and blood test (bigger test than normal). The good news is that the bone marrow biopsy and scans show zero cancer. However his blood test shows that there is still cancer there. Can I ask you, if you remember, when your tests came back showing zero cancer did that include in the blood?

Also can I ask you if you continue to receive any treatment now?

Hope all is well with you, take care

Debbie 

Debbie,

I'm glad to hear that your husband is responding so well. I did as well. When I had my scans done 1/2 way through, they were clear and free of cancer. I imagine my blood showed the same as they never mentioned to me that it was not good. So I went on to have my stem cell transplant a couple months after completeing chemo. That was in October 2006. I am about to finish my 3rd of 4 maintinence (sp) treatment. I go in every 6 months for 1 day a week for 4 weeks. I get Rituxan only. I have had to take the Neupogen shots 4 days in between to bring my white count up.

Is your husband on schedule to get a transplant? I used my own stem cells. I think as long as he is in remission, he should be able to use his too.

Keep in touch, and God Bless!

Kathy  :)