Mantle Cell Lymphoma and HyperCVAD

My mother (54) was diagnosed
My mother (54) was diagnosed with Stage IV Mantle Cell Lymphoma in September, and she is undergoing Hyper-CVAD with Rituxin, to be followed by an autologous stem cell transplant. She is set to have round 6 of the R-Hyper-CVAD next week - it has been a long ordeal already, but thankfully she had a PET scan a few weeks ago that shows her body is responding very well to the treatment.

First of all, MCL is so rare, and has only recently begun to be understood, that the data you may read on the Internet, and the info you may get from a doctor who is not a specialist in non-Hodgkin's lymphomas, can be extremely depressing. You should know that there is hope - a huge amount of progress in treating MCL has been made in the last several years, especially for people who are diagnosed under the age of 60. There is a significant subset of patients who are experiencing very long remissions, there are very good drugs to treat relapse, and there is even talk that there could be a 'cure' in the near future.


Secondly, if you have not already, I really recommend visiting a cancer center, not just a regular hospital or office. My mother lives in Jacksonville, FL, and I brought her up to NY to get a second and third opinion at major cancer centers. All three places recommended different courses of treatment - which was really overwhelming and confusing - but it was clear that the quality of treatment is much better at cancer centers, and when the disease is as rare as this, experience can make a huge difference. This has been demonstrated by survival statistics for patients at cancer centers as well. My mom finally got a final opinion at Moffit cancer Center, a 4 hour drive from her home, and has been treated there since. She stays there for the chemo treatments and goes back home in between. If you are not near a cancer center and can't re-locate for a long time, that is an option as well.

Like I said,everyone had a different opinion of how to treat the MCL - it is so rare and research is changing so quickly that there is no one standard opinion. We were told that the R-Hyper-CVAD would be very toxic, with significant side effects - but my mom is young, feels she has a lot to live for, and decided it was worth it. I truly believe you all are making the best decision to do this treatment - but you have to get the best doctor you can find, pay very careful attention to directions (especially side effects to look for when he is at home between treatments) and always ask questions, take notes - never feel like you are being too pushy when it comes to understanding the situation. This is not a treatment that a lot of hospitals are used to dealing with, so you to be a good 'patient advocate.'

In terms of side effects - everyone is different, but some things are certain: extreme fatigue, neutropenia (which means the patient has to be as isolated as possible) and the need for frequent infusions of blood and platelets. These all happen to different degrees and at different intervals in the chemo cycle. What we found w my mom is that as soon as she was close to feeling 'normal' again, it was time for the next round of chemo. She had to be in the hospital in Jacksonville for several days after developing a 'neutropenic fever' after the B cycles of the Hyper-CVAD. Those were pretty scary times, I am not going to lie. But again - she is young and strong, and we made sure to be as aggressive as we could to ensure she got the attention she needed.

My mom is the director of development for a prominent nursing home in Florida, and they have been wonderful to us - she is technically still employed full time, which protects her health benefits. She works as much as she can over the computer and phone, and her secretary comes to her home sometimes, but she is definitely not putting in full time hours. I do not think someone with less than a very strong worth ethic could work during this treatment, and it definitely requires a very understanding supervisor and the ability to work form home. My mom has been to her office only a few times since she started treatment. Also, she has developed some neuropathy in her fingers and it is not so easy for her to type, but i am told it goes away after the Hyper CVAD. That being said, i know she feels gratified to bee working, and it does take her mind off of her health - so it is therapeutic for someone who is used to being busy.

Whoa I can't believe how much I just wrote! Long story short - it is a very intense treatment, but your husband is young, and there is a lot to be optimistic about - and having that positive mind set can and will make a big difference!

I hope this is helpful. If you would like to speak to me directly, please let me know and I will email you my phone number.

Best of luck!

nmenaged said:

My mother (54) was diagnosed
My mother (54) was diagnosed with Stage IV Mantle Cell Lymphoma in September, and she is undergoing Hyper-CVAD with Rituxin, to be followed by an autologous stem cell transplant. She is set to have round 6 of the R-Hyper-CVAD next week - it has been a long ordeal already, but thankfully she had a PET scan a few weeks ago that shows her body is responding very well to the treatment.

First of all, MCL is so rare, and has only recently begun to be understood, that the data you may read on the Internet, and the info you may get from a doctor who is not a specialist in non-Hodgkin's lymphomas, can be extremely depressing. You should know that there is hope - a huge amount of progress in treating MCL has been made in the last several years, especially for people who are diagnosed under the age of 60. There is a significant subset of patients who are experiencing very long remissions, there are very good drugs to treat relapse, and there is even talk that there could be a 'cure' in the near future.


Secondly, if you have not already, I really recommend visiting a cancer center, not just a regular hospital or office. My mother lives in Jacksonville, FL, and I brought her up to NY to get a second and third opinion at major cancer centers. All three places recommended different courses of treatment - which was really overwhelming and confusing - but it was clear that the quality of treatment is much better at cancer centers, and when the disease is as rare as this, experience can make a huge difference. This has been demonstrated by survival statistics for patients at cancer centers as well. My mom finally got a final opinion at Moffit cancer Center, a 4 hour drive from her home, and has been treated there since. She stays there for the chemo treatments and goes back home in between. If you are not near a cancer center and can't re-locate for a long time, that is an option as well.

Like I said,everyone had a different opinion of how to treat the MCL - it is so rare and research is changing so quickly that there is no one standard opinion. We were told that the R-Hyper-CVAD would be very toxic, with significant side effects - but my mom is young, feels she has a lot to live for, and decided it was worth it. I truly believe you all are making the best decision to do this treatment - but you have to get the best doctor you can find, pay very careful attention to directions (especially side effects to look for when he is at home between treatments) and always ask questions, take notes - never feel like you are being too pushy when it comes to understanding the situation. This is not a treatment that a lot of hospitals are used to dealing with, so you to be a good 'patient advocate.'

In terms of side effects - everyone is different, but some things are certain: extreme fatigue, neutropenia (which means the patient has to be as isolated as possible) and the need for frequent infusions of blood and platelets. These all happen to different degrees and at different intervals in the chemo cycle. What we found w my mom is that as soon as she was close to feeling 'normal' again, it was time for the next round of chemo. She had to be in the hospital in Jacksonville for several days after developing a 'neutropenic fever' after the B cycles of the Hyper-CVAD. Those were pretty scary times, I am not going to lie. But again - she is young and strong, and we made sure to be as aggressive as we could to ensure she got the attention she needed.

My mom is the director of development for a prominent nursing home in Florida, and they have been wonderful to us - she is technically still employed full time, which protects her health benefits. She works as much as she can over the computer and phone, and her secretary comes to her home sometimes, but she is definitely not putting in full time hours. I do not think someone with less than a very strong worth ethic could work during this treatment, and it definitely requires a very understanding supervisor and the ability to work form home. My mom has been to her office only a few times since she started treatment. Also, she has developed some neuropathy in her fingers and it is not so easy for her to type, but i am told it goes away after the Hyper CVAD. That being said, i know she feels gratified to bee working, and it does take her mind off of her health - so it is therapeutic for someone who is used to being busy.

Whoa I can't believe how much I just wrote! Long story short - it is a very intense treatment, but your husband is young, and there is a lot to be optimistic about - and having that positive mind set can and will make a big difference!

I hope this is helpful. If you would like to speak to me directly, please let me know and I will email you my phone number.

Best of luck!

neuropathy side effects from chemo for MCL
I have had 5 of 6 hospital chemo treatments C-VAD for MCL and have had a problem with severe neuropathy in feet, legs and hands. Do you know if there is any help for this side effect?

kalikupaka said:

Personal experience with MCL
I was diagnosed with mantle-cell lymphoma last April (2009) at age 55. I began R-CHOP on June 3, although I had asked for hyper-CVAD, which I finally got after traveling from Wichita to Omaha NE for a second opinion. I ended up getting two cycles of R-CHOP followed by four cycles (two A cycles, two B cycles) of hyer-CVAD. I completed the chemo regimen on Sept. 25. A couple weeks later I began preparations for an autologous stem-cell transplant, which finally took place on Nov. 16. The actual transplant took less than 90 mins. but had been preceded by five days of high-dose chemo (thankfully, Vincristine, which had caused me peripheral neuropathy during R-CHOP and hyper-CVAD, was not part of the mix). In Wichita both chemotherapy and stem-cell transplantation are done on an outpatient basis. This is made possible by the use of take-home pumps that continously pump fluid for hydration and medication to control nausea. Although my hair had shown signs of growing back after nearly four months of R-CHOP/hyper-CVAD, I lost all my head hair, beard/whiskers, and body hair when I underwent that extra week of high-dose chemo in advance of my transplant.
Had I stayed on R-CHOP, I could have easily continued working, since the treatment regimen required only that every third week I meet with my oncologist on Monday, receive Rituxan on Wednesday, and the remaining chemicals on Friday. Hyper-CVAD was much more intense, requiring a full five days every third week, including a return to the hospital's Ambulatory Infusion Center in the evenings for those chemicals that required re-infusion 12 hours later. My first oncologist and his nurse failed to monitor my hemoglobin levels for about 5 weeks during the summer, which left me feeling too weak to get out of bed on many days. I decided to take an entire semester off from work, since I could never be sure how much energy I would have from one day to the next. However, once my hemoglobin levels began to be properly monitored and I received immediate transfusions of blood and platelets, I usually felt fine and probably could have gone to work. Still, since I teach classes at a college, I would have had to cancel an entire week of classes at least every third week, so it really wasn't worth it for me to return to work, especially as I had lots of accumulated sick leave (in all I ended up using 832 sick-leave hours at full salary).
It wasn't until early January that I was finally released from treatment; by mid-January my hair began to grow back, and I'm now back to having to shave every day. I just had a follow-up CT scan and lab work a few days ago and will learn the results when I see my oncologist early next week. I've been back at work full-time for over a month now and I'm feeling normal--no undue fatigue or physical weakness at all.
Good luck!

My Mom has Mantle Cell too
I would love to speak with you about your experieces, etc. with Mantle Cell.

My Mom is 58 and was just diagnosed this past April 2009. I am seeking someone with the same diagnosis as her.

Please get me on Face Book under Melanie Allen or via e mail at Brackstonsmommy@aol.com

Thank you and continued prayers!
Melanie