Newly Diagnosed Mantle Cell
Comments
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Hi Willowwillow55 said:I'm a 59 year old woman with MCL
Thank you for sharing your story. I was diagnosed last month with MCL, and my emotions are all over the map. I have mad one round of treatment with five more to come (bendamustine + rituximab), then the plan is for a stem cell transplant.
I am am someone that keeps super busy, always healthy, planned everything sometimes months in advance - concerts, trips, etc.
i have a 1 year old granddaughter who is the light of my life. I cannot imagine not seeing her grow up.
I wish dish you continued remission.
First thing I saw when I got on the forum this morning was the green banner for your private mess, so I went right there before reading these posts. Hope the info I sent is encouraging. As I told you, it is unbelievable how much study and progress is happening with MCL. Your granddaughter is going to have Gramma for a long time.
Thinking of you,
Becky
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Bestwillow55 said:MCL diagnosis
Good Morning. I was diagnosed with MCL last month. I found a very large lump in my left upper leg, just by a fluke. I've had an ultrasound, core needle biopsy of the node, CT scan, bone marrow biopsy. I started my treatment last week - two days of chemo. Day 1 was bendamustine. Day 2 was that plus rituximab. The plan is to then have a stem cell transplant.
The chemo was fine - my hair will not fall out, but I wasn't concerned about that. I was super flushed and a swollen in the face for 36 hrs and felt a tad 'off'. I only got sick once and felt great afterwards. Every day since about three days after treatment I've been pretty well 100%.
Initially I wasn't sure I wanted treatment - all that and no cure? But I settled down, did a ton of research and am now in full battle mode. I am young, busy and energetic and I have a husband, two kids and a baby granddaughter who want me around.
I have always been super independent and would never ask for help. I've done a 180 on that attitude and am taking advantage of free or inexpensive opportunities such as counselling, yoga, meditation, massage (college students).
I wish you the best.
Willow,
You are in the best of hands with Becky, our resident Mantle Cell expert....she has researched the latest approaches extensively for her husband Bill.
max
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mantle cell
Hi Joe,
My son Chris was diagnosed with Mantle cell in 2009. After 6 months of chemo he had a autologous stem cell transplant.
He is 5 yrs remission. If you would like to speak to him, call him 845-220-7007
He was stage 4 when diagnosed. He had lymph nodes on his neck which I told him to have checked for years. Of course
he was 31 yrs. old and didn't think there was anything to my fear. Each time I saw him I mentioned his neck.
Finally he went (I think it was night sweats also in conjunctions with the swollen lymph nodes)
I believe the chemo he recd was R-CHOP and something else (which I will look back to see what it was)
prior to the stem cell transplant.
Are they talking about the stem cell transplant?
You will be OK! I am glad you have your family to support you. Where are you being treated?
Have a nice weekend,
Lorraine
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Mantle Cellgrannyx4 said:mantle cell
Hi Joe,
My son Chris was diagnosed with Mantle cell in 2009. After 6 months of chemo he had a autologous stem cell transplant.
He is 5 yrs remission. If you would like to speak to him, call him 845-220-7007
He was stage 4 when diagnosed. He had lymph nodes on his neck which I told him to have checked for years. Of course
he was 31 yrs. old and didn't think there was anything to my fear. Each time I saw him I mentioned his neck.
Finally he went (I think it was night sweats also in conjunctions with the swollen lymph nodes)
I believe the chemo he recd was R-CHOP and something else (which I will look back to see what it was)
prior to the stem cell transplant.
Are they talking about the stem cell transplant?
You will be OK! I am glad you have your family to support you. Where are you being treated?
Have a nice weekend,
Lorraine
Thank you for contacting me. I will give Chris a call. I will be being treatrd at MD Anderson in Houston. I went there initially for a second opinion and after the visit I was convinced that is the place to be if possible.
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Hi Joe,
If you were diagnosedHi Joe,
If you were diagnosed in April, why has it taken so long for anyone to start treatment? I know in some cases they
have a wait and see for it to advance stages.
In any case, I am following you on this site and pray for you and your family. Things will go well for you!
Looking forward to hearing about your remission in the very near future!!!!
Lorraine
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Hi Joe,
How are you doing.Hi Joe,
How are you doing. Becky told me you were going to MD Anderson for a clinical trial on
ibrutinib. How has that worked for you?
I mentioned that to my son's doc at Sloan but after
the whole expense thing, they put him in another clinical trial.
It's not working, but not progressing.
We go back tomorrow.
Wishing you the best!
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Also just diagnosed MCL
Joe, and all others... yes that is the same boat I am on now...
Hi, I am a female, to be 53 years old on June 24th, born from German and Dutch parents in Brazil, where I live - and got very recently diagnosed with MCL...
Mid April I felt an enlarged Lymph node on my neck. But I was feeling OK, no problem at all, hiking miles on weekends, teaching at the University, doing my research, and so on. On May 5th I went to a hematologist, because that node was overly big. She made a physical and found several smaller ones around the neck area, my right tonsil was absurdly enlarged too and she could feel that my spleen was enlarged. So she immediately asked for a plethora of exams, including CT scan from face to pelvis, biopsy of the tonsil and neck lymph-node.
The next day I already had complete blood count (CBC) done and, apart from a normal looking profile of red series (RBC), platelet and white series (WBC, leukocytes) had 38% of additional "other cells". Imunophenotyping of these other cells indicated Mantle Cell Lymphoma. Confirmed by the biopsy results. Diffuse growth, proliferation index, as by ki-67 of 80%. CT scan revealed lots os lymph nodes, the biggest was the one on the right side of my neck (about 4 cm), but one other of 2 cm, 1,5 cm, and then a bunch of smaller ones all over the place, including pericardium. And a moderately enlarged spleen. But all other organs do looking OK. Apart from a high beta-micro-globulin, all other lab tests where normal, including LDH, which was at the upper normal level.
The interesting thing is that I had a CBC done in NY (where I was for work for 2 months), at February 28th (2016), and it was normal. Not one "abnormal cell" was detected then. So surprising life can be...
My hematologist scheduled for me 6 rounds chemo, alternating R-CHOP with R-DHAP. Stem cell collection during last rounds. And then the intention is to go for a very hard chemo (I do not know yet exactly which protocol) and rescue with Autologous Stem Cell Transplantation.
It was all so fast I could hardly breathe. From 9-13 May I had to take 100mg predinisone every day for the 5 days. And allopurinol (daily still), and antibiotics (3 times a week, since then), and some other stuff, while awaiting results of biopsy. Lab on the week after showed no progression.
May 26 I had a catheter implanted, May 28 I had my first CHOP round and June 1st my first Rituximab (they do it separately the first time to control reactions, I had only a minor which was immediately controlled). I did feel almost nothing, taking the ondasterone regularly two days after chemo (no sickness, no vomiting). And 4 more days of 100 mg predinisone tablets.
CBC on June 2nd, showed only 4% of abnormal cells in the blood and overall decent values for the rest. Today (June 8th) I had a new CBC, and no abnormal cells were detected today(!). I do not know whether this is usual or unusual after the first chemo, but I was not expecting this and am happy.
But I had a significant drop in overall WBC to 1.115 million/mm3 (normal is from about 3.900 million to 11 million/mm3). The rest of the CBC is fairly OK.
One more CBC to be done next week and on June 20th I will be in the hospital for 3 days for R-DHAP. Is quite heavy (but less than hiper-CVAD). Dreading it a little, because as someone that worked with mutagenisis and DNA repair I am too painfully aware of the treatment effects on the cells.
But, it is what it is, and in this situation I decided just to shut my eyes and jump.
I am separated for 4 years, after being married for 20 years, and have two sons, 18 and 23 years old, enjoy life and do not have not the slightest intention of dying from this lymphoma. I just hope not to die from the chemo, hehe (if you can say hehe in this situation).
That is my MCL story up to now... glad to find a place with others fighting the same "Thing". And Joe, the treatments we have avaliable are improoving very rapidly. We just have to gain some more time and we will take it down. What is/was your treatment plan? Mine is aggressive, but my MCL is very agressive to...
Sorry for my english. Sorry for writing so much. Most probably will not have the endurance to read it all.
Oh, and I probably am going to loose all my hair the days to come...
Is there someone that underwent a similar protocol as the one I am beginning with?
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R-Chop
I have follicular non-Hodgkins lyphoma and did 6 cycles of R-Chop. That prednisone an be nasty. Great when it gives you a "power up" and terrible when you crash about 48 hours after stopping it. I had the Rituxan the same day as the Chop. Had a break of a few months and then had 3 cycles of RICE when the R-Chop did not get all of the cancer. I was scheduled for a auto Stem Cell but there was something odd in my bone marrow biopsy (2 biopsies done afterwards did not show anything odd). We did eventually start stem cell collection but my platelets dropped every time so they stopped. The Dr did looked into a allo/donor/half match but my brother & son were not a match. I've been in remission since Nov and still have no sign of disease. The SCT Dr has decided to put the SCT on hold. I see her in 2 weeks and will get the details of why at that time.
Good luck AngiBrazil
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Hi AngiBrazil
My husband Bill has MCL, dxed 7/11. He had Bendamustine/Rit as his chemo and went right into remission. He relapsed 2 years later and is now on the target drug Ibrutinib and has remained in remission. You can click on our picture to read his story. I don't know if Joe will read this or not but I am in touch with him and we just talked last week. He was on his way home after completing a clinical trial at MD Anderson under Dr. Michael Wang. He was given Ibrutin as first line treatment, (It was released Nov '13 only for relapsed MCL) so this trial is pretty monumental. After taking the Ib for some months, he was then given HyperCvad. Dr Wang was very happy with the results and Joe is finished with the trial other than checkups for a few years. He is in total remission and Dr Wang feels he will stay in remission for many years. At any rate, please know MCL is not as ominous as it once was and there is ongoing research and lots of hope.
Becky
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Hello
Hello AngiBrazil,
My husband Kevin was diagnosed with MCL stage 4 in Feb. 2015. He went through the same protocol as you are facing. He alternated RCHOP and RDHAP and then had a Stem Cell Transplant on Oct. 1st of 2015. He will be glad to answer any questions you may have. Like you said, it is a very aggressive treatment but he is in remission now and doing very good. We wish you the best of luck and will keep you in our prayers and will be here for you along this journey for any questions you may have.
Donna
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Hang in thereAngiBrazil said:Also just diagnosed MCL
Joe, and all others... yes that is the same boat I am on now...
Hi, I am a female, to be 53 years old on June 24th, born from German and Dutch parents in Brazil, where I live - and got very recently diagnosed with MCL...
Mid April I felt an enlarged Lymph node on my neck. But I was feeling OK, no problem at all, hiking miles on weekends, teaching at the University, doing my research, and so on. On May 5th I went to a hematologist, because that node was overly big. She made a physical and found several smaller ones around the neck area, my right tonsil was absurdly enlarged too and she could feel that my spleen was enlarged. So she immediately asked for a plethora of exams, including CT scan from face to pelvis, biopsy of the tonsil and neck lymph-node.
The next day I already had complete blood count (CBC) done and, apart from a normal looking profile of red series (RBC), platelet and white series (WBC, leukocytes) had 38% of additional "other cells". Imunophenotyping of these other cells indicated Mantle Cell Lymphoma. Confirmed by the biopsy results. Diffuse growth, proliferation index, as by ki-67 of 80%. CT scan revealed lots os lymph nodes, the biggest was the one on the right side of my neck (about 4 cm), but one other of 2 cm, 1,5 cm, and then a bunch of smaller ones all over the place, including pericardium. And a moderately enlarged spleen. But all other organs do looking OK. Apart from a high beta-micro-globulin, all other lab tests where normal, including LDH, which was at the upper normal level.
The interesting thing is that I had a CBC done in NY (where I was for work for 2 months), at February 28th (2016), and it was normal. Not one "abnormal cell" was detected then. So surprising life can be...
My hematologist scheduled for me 6 rounds chemo, alternating R-CHOP with R-DHAP. Stem cell collection during last rounds. And then the intention is to go for a very hard chemo (I do not know yet exactly which protocol) and rescue with Autologous Stem Cell Transplantation.
It was all so fast I could hardly breathe. From 9-13 May I had to take 100mg predinisone every day for the 5 days. And allopurinol (daily still), and antibiotics (3 times a week, since then), and some other stuff, while awaiting results of biopsy. Lab on the week after showed no progression.
May 26 I had a catheter implanted, May 28 I had my first CHOP round and June 1st my first Rituximab (they do it separately the first time to control reactions, I had only a minor which was immediately controlled). I did feel almost nothing, taking the ondasterone regularly two days after chemo (no sickness, no vomiting). And 4 more days of 100 mg predinisone tablets.
CBC on June 2nd, showed only 4% of abnormal cells in the blood and overall decent values for the rest. Today (June 8th) I had a new CBC, and no abnormal cells were detected today(!). I do not know whether this is usual or unusual after the first chemo, but I was not expecting this and am happy.
But I had a significant drop in overall WBC to 1.115 million/mm3 (normal is from about 3.900 million to 11 million/mm3). The rest of the CBC is fairly OK.
One more CBC to be done next week and on June 20th I will be in the hospital for 3 days for R-DHAP. Is quite heavy (but less than hiper-CVAD). Dreading it a little, because as someone that worked with mutagenisis and DNA repair I am too painfully aware of the treatment effects on the cells.
But, it is what it is, and in this situation I decided just to shut my eyes and jump.
I am separated for 4 years, after being married for 20 years, and have two sons, 18 and 23 years old, enjoy life and do not have not the slightest intention of dying from this lymphoma. I just hope not to die from the chemo, hehe (if you can say hehe in this situation).
That is my MCL story up to now... glad to find a place with others fighting the same "Thing". And Joe, the treatments we have avaliable are improoving very rapidly. We just have to gain some more time and we will take it down. What is/was your treatment plan? Mine is aggressive, but my MCL is very agressive to...
Sorry for my english. Sorry for writing so much. Most probably will not have the endurance to read it all.
Oh, and I probably am going to loose all my hair the days to come...
Is there someone that underwent a similar protocol as the one I am beginning with?
Angi,
Sorry for not getting back with you sooner. Since getting back from Texas, after 4 months there, we have been so busy trying to get things back to semi normal that I have not been on the net much.
I am sorry for your diagnosis. It is a very stressful time for you and your family. I will put you on my prayer list.
I see you have started a treatment protocol. The one you are on is a very effective treatment. I personally went to MD Anderson in Texas thinking I was going to have pretty much the same treatment. After I got there I met with one of the leading researchers in the country, Dr Michael Wang, and after consulting with him we decided to enter a clinical trial. It was set up in 2 phases. Phase one was Rituxan and Ibrutinib until remission and then consolidation therapy with Hyper CVAD. I just finished 2 weeks ago and have been declared lymphoma free. (Praise God). He seems to think that this therapy will produce a long lasting remisssion. Hopefully so.
I wish you the best as you fight this. Take care and God bless. You will get through this, you have a lot to live for.
Joe
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Thank you all!
Hi, thank you all! (I actually thought thet I would get an e-mail I anything would be posted here and as I did not, I was not aware of someone answering - just saw it)
Yes, I will come back to ask questions, for sure.
Lindary, your topic about your treatment was the first I read in this site, and I thought, what a fighter, with all this treatments and still going to work when possible! My respect!! My university just gave me time off until december, because of the risk of infection in the classrooms (we are in the winter now and flu is raging, besides severall other stuff). I am lucky that I am federal employee. I did not know that you have this post predinisone crash - so that explains some things to me.
Becky, your posts I also read a lot and they were very informative to me. Joe just contacted me and I replied offline (thanks Joe).
Donna, I will ask you a lot of things. Just do not have the time just now. Where was Kevins treatment?
Tomorrow I am going to face the R-DHAP. It seems that it will take 4-8 days in the hospital, dedending on how my kidneys react(?).
My response to R-CHOP was good, it seems. Blood cout two weeks after found leucopenie, but no "other cells", so I had two shoots of G-CSF and have now high leokocytes.
I am keeping physical excercise (walking, hiking) - which seems to be a good thing as it seems to avoid or minimise some sublcinical inflamatory status which can cause the so called chemo brain (just learned about that). My MD told me to be careful not to go trough rough trails, with higher risk for lesions (mainly scratches from trees) and bugs (lots of insect-repelent). Oh, and lots of sunprotection.
It seems we all will have a long jorney ahead of us...
Love,
Angelica
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