Dear Gala,
I am so sorry to learn of the heartbreaking development in your sister's myeloma journey.
I think that we all learn and grow from sharing our heartbreaks and triumphs over this horrible disease, and I'd like to thank you very much for your grace and generosity in sharing your story with us at such a time of anguish.
I hope very much that the new drug protocol will quickly get your sister's myeloma under control, and that she can move on to a stem cell transplant very soon.
Wishing you both all the best,
Karen
Forums
-
KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Extramedullary disease on the head / skull
Terrij and Karen,
Thank you both for your support.
Karen, it means a lot to feel that you are not alone at times like this.
Terrij, I am sorry to hear about your daughter. Did radiation work for her plasmocytomas? In my sister's case, I think radiation was not considered as there are multiple plasmacytomas and they would not irradiate several locations.
My sister has now started a second-line chemotherapy called "EDAP". It is a very aggressive regimen and my sister will be staying in hospital for at least two weeks.
On the positive side, her bone marrow biopsy shows only a slight increase of numbers. It looks like myeloma went from the bone marrow into soft tissue (which is bad from what I read earlier), but the doctors are happy that the M-spike is still almost zero. The biopsy of plasmacytomas, though, showed a high myeloma burden. Not sure what to make of this. I am wondering if perhaps her disease is becoming nonsecretory.
In the meantime, bad side effects from just one day of chemo: very high blood pressure and stomach pain (stomach pain, they think, is from the diuretic my sister is given to tackle water retention). At the same time, the largest plasmacytoma on her head is softer to touch and stopped hurting. We are keeping our fingers crossed.
Thank you both for your support.
Karen, it means a lot to feel that you are not alone at times like this.
Terrij, I am sorry to hear about your daughter. Did radiation work for her plasmocytomas? In my sister's case, I think radiation was not considered as there are multiple plasmacytomas and they would not irradiate several locations.
My sister has now started a second-line chemotherapy called "EDAP". It is a very aggressive regimen and my sister will be staying in hospital for at least two weeks.
On the positive side, her bone marrow biopsy shows only a slight increase of numbers. It looks like myeloma went from the bone marrow into soft tissue (which is bad from what I read earlier), but the doctors are happy that the M-spike is still almost zero. The biopsy of plasmacytomas, though, showed a high myeloma burden. Not sure what to make of this. I am wondering if perhaps her disease is becoming nonsecretory.
In the meantime, bad side effects from just one day of chemo: very high blood pressure and stomach pain (stomach pain, they think, is from the diuretic my sister is given to tackle water retention). At the same time, the largest plasmacytoma on her head is softer to touch and stopped hurting. We are keeping our fingers crossed.
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Extramedullary disease on the head / skull
My daughter had plasmacytomas on her spine, right eye socket, and trachea. They did radiation on her spine and eye socket. She had to have a tracheotomy, which after 2 rounds of DCEP high-dose chemo could be removed.
Good luck to your sister.
Good luck to your sister.
Re: Extramedullary disease on the head / skull
Hi, Terrij,
Your daughter certainly went through quite an ordeal.
My sister has many small lesions on her skin. That is why they are currently hoping that chemo will treat them successfully, as the area is too big for radiation and they do't want to operate on her head. The EDAP chemo (she is having round 1 now) has acted in some way, as the lesions have softened to touch. However, we are not out of the woods yet, as the pathology results are showing extremely high tumor load of the plasmacytomas, which indicates a highly aggressive disease.
The oncologist said my sister will need 'numerous' chemo treatments + treatments to treat side effects. Apparently, EDAP is highly toxic (more than average chemo), and my sister will need blood transfusions, antibiotics, and possibly more drugs to counter the effects of EDAP.
During this one round, there have been problems with high blood pressure, heart rhythm, swelling all over, stomach pain, and possibly kidney damage of some sort. We are obviously very worried whether she could tolerate all these treatments and get her autologous stem cell transplant as planned.
Thanks again for sharing.
Your daughter certainly went through quite an ordeal.
My sister has many small lesions on her skin. That is why they are currently hoping that chemo will treat them successfully, as the area is too big for radiation and they do't want to operate on her head. The EDAP chemo (she is having round 1 now) has acted in some way, as the lesions have softened to touch. However, we are not out of the woods yet, as the pathology results are showing extremely high tumor load of the plasmacytomas, which indicates a highly aggressive disease.
The oncologist said my sister will need 'numerous' chemo treatments + treatments to treat side effects. Apparently, EDAP is highly toxic (more than average chemo), and my sister will need blood transfusions, antibiotics, and possibly more drugs to counter the effects of EDAP.
During this one round, there have been problems with high blood pressure, heart rhythm, swelling all over, stomach pain, and possibly kidney damage of some sort. We are obviously very worried whether she could tolerate all these treatments and get her autologous stem cell transplant as planned.
Thanks again for sharing.
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Extramedullary disease on the head / skull
Gala,
Thanks for posting, I seem to be in a similar position. My body developed a large lump on the rib cage about two months ago. Oncologist thought it was just a benign cyst. Since then, three more smaller ones have developed. I went to Moffitt yesterday and they did a fine needle biopsy. Initial indications are that is myeloma. They are sending for full pathology which should be back in 2 or 3 days.
The blood work came back with no M-spike, but this is typical for me. I do have a rise in lambda free light chains, they are currently at 80.1 Monday I go to have a full body PET scan to see what other cysts have developed and for a bone marrow biopsy. My last bone marrow biopsy showed ~3% bone involvement, which was very good. At that time my stem cells were harvested.
The specialist said that this is not typical and only happens in 10- 15% of cases and wants me to start in a trial with Keytruda (pembrolizumab), Pomalyst (pomalidomide), and dexamethasone. I feel like I am back at square one.
Thanks for posting, I seem to be in a similar position. My body developed a large lump on the rib cage about two months ago. Oncologist thought it was just a benign cyst. Since then, three more smaller ones have developed. I went to Moffitt yesterday and they did a fine needle biopsy. Initial indications are that is myeloma. They are sending for full pathology which should be back in 2 or 3 days.
The blood work came back with no M-spike, but this is typical for me. I do have a rise in lambda free light chains, they are currently at 80.1 Monday I go to have a full body PET scan to see what other cysts have developed and for a bone marrow biopsy. My last bone marrow biopsy showed ~3% bone involvement, which was very good. At that time my stem cells were harvested.
The specialist said that this is not typical and only happens in 10- 15% of cases and wants me to start in a trial with Keytruda (pembrolizumab), Pomalyst (pomalidomide), and dexamethasone. I feel like I am back at square one.
-
Conundrum One - Name: Donna
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/21/15
- Age at diagnosis: 55
Re: Extramedullary disease on the head / skull
Hi Donna,
Thank you for posting. Yes, yours sounds like a similar situation. My sister's bone marrow biopsy does not show an M-spike either at this time (it was very high at diagnosis). Her doctor explained that it can happen that cancer is now 'migrated' from bone marrow into extramedullary form (in soft tissues in my sister's case). Yes, it is extremely rare and difficult to treat, but hang in there, it sounds like your treatment is more novel and promising than the one my sister is getting (EDAP).
I have read a lot about Pomalyst (pomalidomide) being good specifically for plasmacytomas and extramedullary disease. I hope it works for you.
Our concern now is for my sister to survive chemo. It is brutal and she has terrible side effects (the worst are high blood pressure as infusion reaction and severe mucositis). But her plasmacytomas are shrinking rapidly (keeping fingers crossed).
Thank you for posting. Yes, yours sounds like a similar situation. My sister's bone marrow biopsy does not show an M-spike either at this time (it was very high at diagnosis). Her doctor explained that it can happen that cancer is now 'migrated' from bone marrow into extramedullary form (in soft tissues in my sister's case). Yes, it is extremely rare and difficult to treat, but hang in there, it sounds like your treatment is more novel and promising than the one my sister is getting (EDAP).
I have read a lot about Pomalyst (pomalidomide) being good specifically for plasmacytomas and extramedullary disease. I hope it works for you.
Our concern now is for my sister to survive chemo. It is brutal and she has terrible side effects (the worst are high blood pressure as infusion reaction and severe mucositis). But her plasmacytomas are shrinking rapidly (keeping fingers crossed).
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Extramedullary disease on the head / skull
I would like to update everyone on my sister's situation.
After one round of the EDAP treatment regimen, her plasmacytomas are now all gone, and she is back in remission from multiple myeloma. However, the biopsy of her plasmacytomas showed a very aggressive disease, and she had terrible side effects from the EDAP (high blood pressure, mucositis, bad cough, diarrhea).
The doctors now moved her transplant forward and tomorrow she is going to be admitted for inpatient high-dose chemo (not sure which agent they are going to use) with the transplant to follow. All this time she will be in isolation.
She is worried about the cough, but her breath function test is OK and chest x-ray is also normal at this time. We are keeping our fingers crossed. The doctors want to do another transplant later also.
I'll keep you posted.
After one round of the EDAP treatment regimen, her plasmacytomas are now all gone, and she is back in remission from multiple myeloma. However, the biopsy of her plasmacytomas showed a very aggressive disease, and she had terrible side effects from the EDAP (high blood pressure, mucositis, bad cough, diarrhea).
The doctors now moved her transplant forward and tomorrow she is going to be admitted for inpatient high-dose chemo (not sure which agent they are going to use) with the transplant to follow. All this time she will be in isolation.
She is worried about the cough, but her breath function test is OK and chest x-ray is also normal at this time. We are keeping our fingers crossed. The doctors want to do another transplant later also.
I'll keep you posted.
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Extramedullary disease on the head / skull
Wishing your sister well. I have plasmacytomas on my sternum and clavicle. I think the plasma cells leaked out through tiny bone fractures. I'll know more next week.
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Extramedullary disease on the head / skull
Hi Chris,
Thank you for your wishes. It looks like you have been diagnosed very recently. I hope you respond well to treatment and your myeloma will be stable for a long time. My sister was diagnosed when she developed a plasmacytoma in her breast. Before that she had a lot of complaints, very bad blood tests, and extreme bone pain, but the doctors did not know what was causing that until they removed the tumor in her breast and biopsied it. That was about a year ago.
My sister has just had two days of high-dose chemo. She will receive her transplant any time now. She is very anxious about it. We all are. But it seems her only option, as her multiple myeloma is of a very aggressive type. We are hoping for the best. So far she is holding on.
Please keep us posted about your progress. Have you already been diagnosed with multiple myeloma? Plasmacytomas sometimes can be solitary and self-limiting. Those can be curable.
Thank you for your wishes. It looks like you have been diagnosed very recently. I hope you respond well to treatment and your myeloma will be stable for a long time. My sister was diagnosed when she developed a plasmacytoma in her breast. Before that she had a lot of complaints, very bad blood tests, and extreme bone pain, but the doctors did not know what was causing that until they removed the tumor in her breast and biopsied it. That was about a year ago.
My sister has just had two days of high-dose chemo. She will receive her transplant any time now. She is very anxious about it. We all are. But it seems her only option, as her multiple myeloma is of a very aggressive type. We are hoping for the best. So far she is holding on.
Please keep us posted about your progress. Have you already been diagnosed with multiple myeloma? Plasmacytomas sometimes can be solitary and self-limiting. Those can be curable.
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Extramedullary disease on the head / skull
Hi Gala,
Yes, I was diagnosed, unfortunately. Most recent M-spike of 2.9 g/dl (29 g/l) and multiple lesions showing up on PET. I will start treatment tomorrow.
Yes, I was diagnosed, unfortunately. Most recent M-spike of 2.9 g/dl (29 g/l) and multiple lesions showing up on PET. I will start treatment tomorrow.
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
25 posts
• Page 2 of 3 • 1, 2, 3