Dear Husker Fan,
I recently read a review describing Ken Anderson's work at Dana Farber, where he called the changes in chromosomes, Isotype Class Switch Recombination (iCSR). In the review it is said that abnormalities of 14q32 are observed in virtually all patients with multiple myeloma. and that iCSR is a universal hallmark of multiple myeloma.
They went on to say that the genetic disorder is a mutation in CD40 where the isotype switches from producing IgM B cells to IgG.
Scientifically, 14q 32 is shorthand for q is long arm of chromosome 14 and 32 is the gene locus position on the arm.
Also p53 deletion is found in over 50% of cancers.
Deletion of 13Q is discussed in this paper:
http://annonc.oxfordjournals.org/content/13/suppl_4/43.full.pdf
Lastly, bortezomib has been shown to be effective in multiple myeloma patients with 13qdeletion.
Hope that helps.
Go BLUE!!!
Forums
Re: Looking for anyone with deletion 13q with p53 deletion..
Hello all,
My wife was diagnosed for multiple myeloma in july 2011 and with FISH they detected also -17p 13.1.
We are from Holland and i'm agree it's very difficult to find information or prognosis for such's patients. My wife is 48 years and she was included in a study called HOVON-95. It's a study to proof that a chemo with Velcade is better then a SCT. However she finished this study now and she got a VGPR , however, here hemoglobine stays around 5,0/mmol which very low and not increasing. Besides here low Hb she's tired but that's all, actually no other symptoms/problems she have.
Offcourse i also looking at internet to gather more information, but this info is so different in every study, some studie show's an OS of 2 years, other 4 years, and beside that i see also some patients who already live more than 7 years PF. It's all about statistics.
Her treating professor told us that right now the chemo with Bortezomid is the best approach, but he also considered if an allogenic transplantation will be an option.
I know for sure that even for a doctor it's not predictable how long the survival time will be.
But what scared us most is that multiple myeloma is a sniper-killer and that we only can wait and see what the future will bring us.
I don't know if this contribute to the discussion over here but anyway, we like to do it.
Robert
My wife was diagnosed for multiple myeloma in july 2011 and with FISH they detected also -17p 13.1.
We are from Holland and i'm agree it's very difficult to find information or prognosis for such's patients. My wife is 48 years and she was included in a study called HOVON-95. It's a study to proof that a chemo with Velcade is better then a SCT. However she finished this study now and she got a VGPR , however, here hemoglobine stays around 5,0/mmol which very low and not increasing. Besides here low Hb she's tired but that's all, actually no other symptoms/problems she have.
Offcourse i also looking at internet to gather more information, but this info is so different in every study, some studie show's an OS of 2 years, other 4 years, and beside that i see also some patients who already live more than 7 years PF. It's all about statistics.
Her treating professor told us that right now the chemo with Bortezomid is the best approach, but he also considered if an allogenic transplantation will be an option.
I know for sure that even for a doctor it's not predictable how long the survival time will be.
But what scared us most is that multiple myeloma is a sniper-killer and that we only can wait and see what the future will bring us.
I don't know if this contribute to the discussion over here but anyway, we like to do it.
Robert
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Robert
Re: Looking for anyone with deletion 13q with p53 deletion..
Hello,
My dad was diagnosed with multiple myeloma with p53 deletion in November. I actually posted a question titled "Velcade dosage" a few weeks ago. But let me write the story once again.
So, initially, he had Velcade dexa and thalidom 50mg/d. His kappa went down from 600ish to 150ish. Then it went up to 170. Doctor increased the dosage of thalidom to 100mg/d; but after only 2 days, he could not tolerate the drowsiness. Doctor then switched the thalidom to cyclophosphamide for another 2 cycles. Unfortunately, his kappa went up to 200 and kis kappa lambda ratio went up to 28 from 14 for the last two blood test.
Doctor told us he should switch to Revlimid; but God, it costs about 8,000USD per month. So we decided to go back to thalidom 100mg/d for a cycle, see the response, and if there's still no response, we'll take the Revlimid.
After 1 cycle, we are looking to collect the stem cells autologously, and transplantation within the 2 cycles.
Fortunately, my dad's kidney is excellent, his HB reading was 9.8, and otherwise in a very good health. He is actually gaining weight. He is 61 yo and weighs 61 kgs.
Im not sure about the 17del...
Good luck for us all.
My dad was diagnosed with multiple myeloma with p53 deletion in November. I actually posted a question titled "Velcade dosage" a few weeks ago. But let me write the story once again.
So, initially, he had Velcade dexa and thalidom 50mg/d. His kappa went down from 600ish to 150ish. Then it went up to 170. Doctor increased the dosage of thalidom to 100mg/d; but after only 2 days, he could not tolerate the drowsiness. Doctor then switched the thalidom to cyclophosphamide for another 2 cycles. Unfortunately, his kappa went up to 200 and kis kappa lambda ratio went up to 28 from 14 for the last two blood test.
Doctor told us he should switch to Revlimid; but God, it costs about 8,000USD per month. So we decided to go back to thalidom 100mg/d for a cycle, see the response, and if there's still no response, we'll take the Revlimid.
After 1 cycle, we are looking to collect the stem cells autologously, and transplantation within the 2 cycles.
Fortunately, my dad's kidney is excellent, his HB reading was 9.8, and otherwise in a very good health. He is actually gaining weight. He is 61 yo and weighs 61 kgs.
Im not sure about the 17del...
Good luck for us all.
Re: Looking for anyone with deletion 13q with p53 deletion..
Thalidomide is considered as not very good at all for patients with the del17p13 deletation.
Please talk to your dad´s doctor about the thalidomide.
I think Velcade or Carfilzomib is the best option for him!!!
glg
Please talk to your dad´s doctor about the thalidomide.
I think Velcade or Carfilzomib is the best option for him!!!
glg
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Katrin
Re: Looking for anyone with deletion 13q with p53 deletion..
The doctor increased the dosage of the thalidomide to 100 mg/day. It works quite well... after 8 cycles, his kappa is at 70... almost a 90% drop since he was first diagnosed. He'll have his last cycle of VTD regime as of tomorrow. We're looking for SCT next month. He's very healthy, and I hope that he'll be alright and achieve remission for as long as God permits.
We thought he initially had a metastasis from his lung. It turns out that multiple myeloma is not that bad, after all
stay strong (and thirsty) my friends.
We thought he initially had a metastasis from his lung. It turns out that multiple myeloma is not that bad, after all
stay strong (and thirsty) my friends.Re: Looking for anyone with deletion 13q with p53 deletion..
Hello,
My mom was diagnosed March of 2011 with "smoldering" multiple myeloma. She also has the 13th deletion. We only discovered the cancer becuase she had these rare bumps on her upper arm that the dermatologist could not figure out what they were, even after 2 biopsies. So she sent her to a hemitologist/oncologist who did a bone marrow biopsy and found the myeloma. The bumps were a symptom of the myeloma which was very surprising to the doctors.
The doctor wanted to wait, watch and see. However we got a second opinion at Cancer Treatment Centers of America in Tulsa, OK which is the most amazing place and it turns out that it was not smoldering, it was active showing 12% plasma cells. She also had a blood disorder that was caused by the cancer called Vasculopathy. She was started on a Velcade/Methotrexate regimen immediately, 2 times a week, for 2 weeks and then a one week break was one cycle. She did this for 5 cycles and it put her into complete remission. So in January of this year we harvested her stem cells and she had stem cell transplant at OU medical in Oklahoma City. It was an amazing place with amazing doctors and staff!
She was in the hospital for about 3 weeks. When they gave her the stem cells back, she had an allergic reaction to the preservative they put in the cells and was violently sick while they transfused back into her body. For the next week she just had flu like symptoms, didn't eat much, her taste buds died so nothing tasted good. Then she got a blood clot around her central line and had heparin induced thrombocytopenia and spiked a fever of 104. This is when it got really scary and we thought we might lose her. But she pulled through. We got her home the end of February.
She was put into a FULL remission the first 9 months. We found out a month ago it was back, bone marrow biopsy showed 20% plasma cells. We were very devastated after going through that hell we thought she would at least have a year or two in remission. However, we decided it was ok and we would start a maintanence treatment. She is only 53, her kidneys are still function perfectly and there's so many options for her now for this cancer! So her dr put her on Revlimid/Dexa combo and she just finished her first month and is already in remission!!!!
Other than battling fatique and her anxiety which has crept up on us ever since the transplant , she is doing well. If anyone else battles anxiety that you never have had before diagnosis will you please let me know. She has been dealing with debilitating anxiety that we are trying to get under control so she can function in her every day life.
I just wanted to let others no that no matter what type of myeloma you have there is a lot of hope and so many new options available. God Bless and Happy New Year.
My mom was diagnosed March of 2011 with "smoldering" multiple myeloma. She also has the 13th deletion. We only discovered the cancer becuase she had these rare bumps on her upper arm that the dermatologist could not figure out what they were, even after 2 biopsies. So she sent her to a hemitologist/oncologist who did a bone marrow biopsy and found the myeloma. The bumps were a symptom of the myeloma which was very surprising to the doctors.
The doctor wanted to wait, watch and see. However we got a second opinion at Cancer Treatment Centers of America in Tulsa, OK which is the most amazing place and it turns out that it was not smoldering, it was active showing 12% plasma cells. She also had a blood disorder that was caused by the cancer called Vasculopathy. She was started on a Velcade/Methotrexate regimen immediately, 2 times a week, for 2 weeks and then a one week break was one cycle. She did this for 5 cycles and it put her into complete remission. So in January of this year we harvested her stem cells and she had stem cell transplant at OU medical in Oklahoma City. It was an amazing place with amazing doctors and staff!
She was in the hospital for about 3 weeks. When they gave her the stem cells back, she had an allergic reaction to the preservative they put in the cells and was violently sick while they transfused back into her body. For the next week she just had flu like symptoms, didn't eat much, her taste buds died so nothing tasted good. Then she got a blood clot around her central line and had heparin induced thrombocytopenia and spiked a fever of 104. This is when it got really scary and we thought we might lose her. But she pulled through. We got her home the end of February.
She was put into a FULL remission the first 9 months. We found out a month ago it was back, bone marrow biopsy showed 20% plasma cells. We were very devastated after going through that hell we thought she would at least have a year or two in remission. However, we decided it was ok and we would start a maintanence treatment. She is only 53, her kidneys are still function perfectly and there's so many options for her now for this cancer! So her dr put her on Revlimid/Dexa combo and she just finished her first month and is already in remission!!!!
Other than battling fatique and her anxiety which has crept up on us ever since the transplant , she is doing well. If anyone else battles anxiety that you never have had before diagnosis will you please let me know. She has been dealing with debilitating anxiety that we are trying to get under control so she can function in her every day life.
I just wanted to let others no that no matter what type of myeloma you have there is a lot of hope and so many new options available. God Bless and Happy New Year.
-
Hopeful Tulsa
Re: Looking for anyone with deletion 13q with p53 deletion..
Hi Tulsa, I can fully understand your mother's anxiety. Prior to my diagnosis last year, about the strongest thing I took for anxiety and worry was a mug of chamomile tea and honey. When I am anxious now or in order to sleep through the dex effects, I simply take alprazolam (Xanax). It works quickly, doesn't make you "high" and eases the worry and anxiety. Good luck. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
17 posts
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