Mantle Cell Lymphoma

Djzlady96

gmusgrove said:

Mantle Cell Lymphoma
I am a Mantle Cell Lymphoma (MCL) survivor. I was originally dx with MCL on 4/15/08. Cancer was originally located in my colon. I was very constipated and had bathroom problems. After a bone marrow biopsy it show no MCL in my blood. I was stage 2E. I also had no night sweat, weight loss or lumps. My oncologisty recommended doing chemo and a SCT to give me the longest possible time of remission. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. Went into remission. I had a stem cell transplant (SCT) on 09/04/08. My new birthday. I was able to use my own SCTs. My blood was still clear. Did transplant in Dallas, TX at Texas Oncology at Baylor University Medical Center. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had a colonscopy in Dec. 2008. It showed a complete recover from the cancer. I am now being watch every 3 months to keep an eye on the cancer. Finding out that you have cancer is a real big blow in anyones life. Support from drs, family and many friends keep me going. A positive attitude is very important. The imporant thing is to fight. Cancer is a battle. Praying that God will put doctors and others in your life to answer your questions. Always ask questions.

gmusgrove

how are things
Wondering how you are doing to date.

BuckeyeNut1948

Mantle Cell Lymphoma
My husband was diagnosed with Mantle Cell Non-Hodgkins Lymphoma in Aug. 2010. He went through CVAD chemo, plus an autologous stem cell transplant. We met 2 people at the James Cancer Center at OSU University Hospital in Columbus, OH who had also had Mantle Cell Lymphoma. One was 11 years post treatment, the other 12 years. And they looked very good. My husband's started with hives that would not go away...which his oncologist stated that hives was not usually a symptom that patients had at all with MCL. Did your husband deal with hives at all? We know a woman at our church which her dad and brother both had MCL and both had hives as their first and only symptom just like my husband.

The treatment (chemo and stem cell transplant) was extremely hard on him as he lost over 50 lb. (which he had plenty to lose to begin with), but he battled it very well considering how rough the chemo and stem cell transplant were for him. He was 62 years old when he was diagnosed and started treatment.

Did you husband have hives? I'm just curious seeing that when he initially went after diagnosed, his oncologist stated that they don't see hives. But then after he was done with chemo and in remission, she released him to the stem cell transplant who once that was completed released him back to his oncologist. He was diagnosed in Aug. 2010 and she told us then when he was returned to the oncologist that since she had last seen my husband in Oct. that she had since seen a few cases of MCL with hives as the presenting symptom.

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

BuckeyeNut1948

JenRN said:

Mantle cell lymphoma is rare. It is usually detected in the later stages. The good news is that it's slow growing. My father-in-law was diagnosed in 11/02. He just received a stem cell transplant last month, he's doing much better than ever prognosed.

My husband was diagnosed in
My husband was diagnosed in Aug. 2010 and his was found early...not too much deep involvement, but still state IV since it was located in his neck, groin, spleen and bone marrow, but again, not heavy involvement. They offered to watch and wait, but he chose rather to get started with it! He's doing very well now, but I am concerned since his platelets were right at low normal that maybe they are dropping since he just in the last couple of days had a couple incidents of very small cuts that really bled a lot for no bigger than the cuts! At least they are studying this disease more...and I'm occasionally hearing of someone who was diagnosed or someone who knew someone who was diagnosed. So I think it's on the increase. My husband's started with hives that kept getting worse which was not a symptom, but have heard of a few who did start just like that...and since he was done with transplant, his oncologist told him they had seen a few with similar start as he had!! With hives. Anyone else with hives?

BuckeyeNut1948

JenRN said:

Mantle cell lymphoma is rare. It is usually detected in the later stages. The good news is that it's slow growing. My father-in-law was diagnosed in 11/02. He just received a stem cell transplant last month, he's doing much better than ever prognosed.

My husband was diagnosed in
My husband was diagnosed in Aug. 2010 and his was found early...not too much deep involvement, but still state IV since it was located in his neck, groin, spleen and bone marrow, but again, not heavy involvement. They offered to watch and wait, but he chose rather to get started with it! He's doing very well now, but I am concerned since his platelets were right at low normal that maybe they are dropping since he just in the last couple of days had a couple incidents of very small cuts that really bled a lot for no bigger than the cuts! At least they are studying this disease more...and I'm occasionally hearing of someone who was diagnosed or someone who knew someone who was diagnosed. So I think it's on the increase. My husband's started with hives that kept getting worse which was not a symptom, but have heard of a few who did start just like that...and since he was done with transplant, his oncologist told him they had seen a few with similar start as he had!! With hives. Anyone else with hives?

Macman

BuckeyeNut1948 said:

My husband was diagnosed in
My husband was diagnosed in Aug. 2010 and his was found early...not too much deep involvement, but still state IV since it was located in his neck, groin, spleen and bone marrow, but again, not heavy involvement. They offered to watch and wait, but he chose rather to get started with it! He's doing very well now, but I am concerned since his platelets were right at low normal that maybe they are dropping since he just in the last couple of days had a couple incidents of very small cuts that really bled a lot for no bigger than the cuts! At least they are studying this disease more...and I'm occasionally hearing of someone who was diagnosed or someone who knew someone who was diagnosed. So I think it's on the increase. My husband's started with hives that kept getting worse which was not a symptom, but have heard of a few who did start just like that...and since he was done with transplant, his oncologist told him they had seen a few with similar start as he had!! With hives. Anyone else with hives?

Hives
I was diagnosed in February with NHMCL and I am currently undergoing Chemo (Nordic 2 protocol). I didn't have the hives, but I had intense body itching whcih went away right after my first Chemo treatment. Since I started my chemo my platelets stay pretty low and I have to be very careful about cuts too. Normal for them to drop with Chemo, but they do come back up. Hopefully he has seen that too.

Lawclerkone

Mantle Cell Lymphoma
My prayers are with you and your family. I too have been diagnoised with MCL on 3-2-12. My treatment plan consisted of 3 phases. First phase, 6 one week chemo treatments in hospital with 2 weeks off at home. I just completed 6 rounds of week long chemo treatments. Every thing looks good. I have completed 2 and have 2 more spinal tap chemo injections to complete phase 2 of my treatment plan. Since MCL is so aggressive it likes to cross the blood brain barrier in an attempt to survive. I urge everyone with MCL to check into the spinal tap procedures to prevent MCL from crossing the blood brain barrier. Phase 3 is stem cell transplant which is scheduled for Aug-Sept time frame of 2012. Anyone who wants to know, I will keep them informed as to my progress. Everyone that meets me wants to know how I can be so cheerful, content and happy. My answer, I love my children, family and grandchildren none of which want me to give up or quit. For them I will eat, exercise and be happy no matter what. I firmly believe in drinking juices and green teas with pomagrante. Don’t worry be happy!!! We can beat this with proper treatment, a paositive attitude and behavior.

cardinal4841

BuckeyeNut1948 said:

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

mantle cell


My husband had a swollen lymph node on his face last year. Went to a head and neck doctor at Cleveland Clinic. It was removed. Then few months later started to come back. At that time we decided to go to osu. He went threw one course of chemo. Had bad reactions.Also this was Dec of 2011. But did get better from the chemo. Just went up to osu last Wednesday and they decided to wait and see how things went. After chemo he did get more lymph nodes swollen.Started with one now has nine.


Friday he did start coming down with hives,which has not had before with mcl.If not better will call the oncologist tomorrow.My question was who is the best oncologist at OSU?
Hope your husband is doing better. Will pray for both of you.

cardinal4841

BuckeyeNut1948 said:

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

mantle cell


My husband had a swollen lymph node on his face last year. Went to a head and neck doctor at Cleveland Clinic. It was removed. Then few months later started to come back. At that time we decided to go to osu. He went threw one course of chemo. Had bad reactions.Also this was Dec of 2011. But did get better from the chemo. Just went up to osu last Wednesday and they decided to wait and see how things went. After chemo he did get more lymph nodes swollen.Started with one now has nine.


Friday he did start coming down with hives,which has not had before with mcl.If not better will call the oncologist tomorrow.My question was who is the best oncologist at OSU?
Hope your husband is doing better. Will pray for both of you.

cardinal4841

BuckeyeNut1948 said:

mantle cell repapse
I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

mantle cell

My husband had a swollen lymph node on his face last year. Went to a head and neck doctor at Cleveland Clinic. It was removed. Then few months later started to come back. At that time we decided to go to osu. He went threw one course of chemo. Had bad reactions.Also this was Dec of 2011. But did get better from the chemo. Just went up to osu last Wednesday and they decided to wait and see how things went. After chemo he did get more lymph nodes swollen.Started with one now has nine.


Friday he did start coming down with hives,which has not had before with mcl.If not better will call the oncologist tomorrow.My question was who is the best oncologist at OSU?
Hope your husband is doing better. Will pray for both of you.

illead

BuckeyeNut1948 said:

My husband was diagnosed in
My husband was diagnosed in Aug. 2010 and his was found early...not too much deep involvement, but still state IV since it was located in his neck, groin, spleen and bone marrow, but again, not heavy involvement. They offered to watch and wait, but he chose rather to get started with it! He's doing very well now, but I am concerned since his platelets were right at low normal that maybe they are dropping since he just in the last couple of days had a couple incidents of very small cuts that really bled a lot for no bigger than the cuts! At least they are studying this disease more...and I'm occasionally hearing of someone who was diagnosed or someone who knew someone who was diagnosed. So I think it's on the increase. My husband's started with hives that kept getting worse which was not a symptom, but have heard of a few who did start just like that...and since he was done with transplant, his oncologist told him they had seen a few with similar start as he had!! With hives. Anyone else with hives?

Hives
My husband was diagnosed a year ago July. A few days after his diagnosis, he went downhill dramatically. Very low blood counts and platelet count and needed a wheelchair. They started chemo right away and by Feb. he was in complete remission. His chemo was bendamustine with rituxan. Much easier to tolerate than R-Chop etc. He never had any adverse reaction. He also had very bad hives that probably started at least a year before his diagnosis and got worse and worse. At times he looked like he had alligator skin. When they got on his lips, they were hard knots and his lips would puff up drastically. He said he looked like Homer Simpson. The doctor also says hives are not a symptom but was very interested in the fact that he had them. He still gets a few small hives, maybe once a week. He takes Cetrizine and they go right away. Did you indicate that your husband had a stem cell transplant? That is our next option, we are just waiting for our ins. to okay it?

cynthia89

Osteopenia/Prolia/Mantle Cell Lymphoma

I finished treatment for stage IV Mantle Cell Lymphoma December, 2016.  I have just been told I have ostiopenia and my oncologist wants me to start on Prolia.  Does anyone out there have any experience with this?  I've been doing some research, and am not comfortable with all the side effects.  I don't want broken bones, but just want more info.

 

abcma

cynthia89 said:

Osteopenia/Prolia/Mantle Cell Lymphoma

I finished treatment for stage IV Mantle Cell Lymphoma December, 2016.  I have just been told I have ostiopenia and my oncologist wants me to start on Prolia.  Does anyone out there have any experience with this?  I've been doing some research, and am not comfortable with all the side effects.  I don't want broken bones, but just want more info.

 

Prolia

I do not have lymphoma, but I read this message board because a good friend does have Mantle Cell.  I have had Prolia shots every 6 monhts for about 3 years.  I have had no side effects and find it more convenient  than taking Biphosphates.  There is a lot of good information about Prolia on the following site.  It includes data on adverse effects. https://www.amgen.ca/products/~/media/1e79aee7d94340df88c3d97f5bb897c3.ashx  Some of the things I was concerned about didn’t seem statistically significant.

Bev