My sisters multiple myeloma has relapsed. MRI showed a tumor growth in each shoulder. One ended up fracturing her right humerus and she had a rod and nailing done. Both are now being treated with radiation and she's just completed her first cycle of krypolis last week. This weekend she noticed a lump in the back of her neck, a small one on her breast and several others on her back. Most aren't tender and the doctor said he's never seen or heard of myeloma behaving this way. He also said her numbers had improved after just one week of treatment so he was surprised.
I've googled to see if there's been anything like this and can't seem to find anything. Only thing I found was more like a rash and not lumps. I know this may sound weird but I have an overweight cat that has lumps near his tail. When I first felt these lumps I panicked but vet did biopsy and it turned out to be fatty cysts. I would love to hear the same results with sis but with multiple myeloma you never know. Wondering if anyone has ever heard of this?
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Re: Strange lumps/cysts on back and neck
I know it isn't the answer you want to hear, but there is a real chance that the lumps are additional plasmacytomas. When my husband relapsed from his stem cell transplant, he had an m-spike of 0.0, but he had tumors. They used radiation for two on his shin and skull, until more started popping up in other places (legs, chest, cheek- in the soft tissue, arm, etc- biopsied, so we know they were myeloma). He was put on Kyprolis [carfilzomib], but that didn't result in any changes to the lumps. He was put on a Velcade, Cytoxan [cyclophosphamide], dex combo and the lumps were gone within a matter of weeks.
One thing I have learned during this process (and lots of reading of different papers) is that myeloma that is still in your bones and extramedullary (outside the bones - i.e. plasmacytomas) myeloma can respond very differently to the same drug. Keep in mind that every patient is different, so the Kyprolis may do the trick for your sister. If not, there are still a lot of other options to explore.
Oh, and just as a side note, only the first tumor on his leg showed up as "active" in the PET scan, even though we know (due to later biopsy) that there were more that were active- they just weren't big enough to register during the first scan.
Wishing your sister the best with her treatment - so great that you can be an advocate for her!
One thing I have learned during this process (and lots of reading of different papers) is that myeloma that is still in your bones and extramedullary (outside the bones - i.e. plasmacytomas) myeloma can respond very differently to the same drug. Keep in mind that every patient is different, so the Kyprolis may do the trick for your sister. If not, there are still a lot of other options to explore.
Oh, and just as a side note, only the first tumor on his leg showed up as "active" in the PET scan, even though we know (due to later biopsy) that there were more that were active- they just weren't big enough to register during the first scan.
Wishing your sister the best with her treatment - so great that you can be an advocate for her!
Re: Strange lumps/cysts on back and neck
EJ recently found a small lump on his backside. He went to his GP, who referred him to a surgeon. He is having it removed next week. Most likely it is a sebaceous cyst. When I googled this I found out that they are basically an infection at the root of a hair shaft that becomes infected. People who have compromised immune systems can be more prone to get them.
Lyn
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Strange lumps/cysts on back and neck
Thanks for the responses. You're right that I would have loved a different answer but the fact that chemo did work on your husband offers hope. I wish I could say they are ingrown hairs, but it doesn't look that way. Will still keep the faith in a positive outcome no matter what.
Btw it's not easy being an advocate. I have had so much anger and anxiety. I took a leave from work since Feb so I could stay home until she becomes a bit more stable. It's been rough financially but after seeing how she was misdiagnosed for so long, I don't want her fighting this monster alone. I just obtained a copy of her last lab results with the kappa and ratio info and now I'm trying to figure that out. Sometimes it feels like I'm reading Chinese lol
Btw it's not easy being an advocate. I have had so much anger and anxiety. I took a leave from work since Feb so I could stay home until she becomes a bit more stable. It's been rough financially but after seeing how she was misdiagnosed for so long, I don't want her fighting this monster alone. I just obtained a copy of her last lab results with the kappa and ratio info and now I'm trying to figure that out. Sometimes it feels like I'm reading Chinese lol
Re: Strange lumps/cysts on back and neck
Hello Grizabella,
Relapsed myeloma can definitely behave like this. As the disease becomes more resistant, myeloma may leave the bone marrow and show up in other parts of the body like the soft tissues and skin. The only way to be sure what these bumps are is to biopsy them or to see if they disappear with treatment of the myeloma.
Relapsed myeloma can definitely behave like this. As the disease becomes more resistant, myeloma may leave the bone marrow and show up in other parts of the body like the soft tissues and skin. The only way to be sure what these bumps are is to biopsy them or to see if they disappear with treatment of the myeloma.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Strange lumps/cysts on back and neck
Well my sister ended up being admitted yesterday after she cancelled her pet scan and radiation due to her severe abdominal pain. They did a ct scan and found various soft tissue masses throughout her abdomen. They will be doing further testing today. Her vital organs are still functioning fine.
'm wondering if these turn up to be active tumors, how is it usually treated since it's spread out like this? How successful is treatment? I've always been under the impression that once cancer spreads, it's over.
'm wondering if these turn up to be active tumors, how is it usually treated since it's spread out like this? How successful is treatment? I've always been under the impression that once cancer spreads, it's over.
Re: Strange lumps/cysts on back and neck
I have several plasmacytomas in lymph nodes. I also had one in my right humerous bone, first tumor. Being treated now with Velcade/dex injections weekly.
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Retired813 - Name: Joyce
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 55
Re: Strange lumps/cysts on back and neck
Just found a lump / tumor on left shoulder near clavicle. Have been on 20 mg Revlimid, 40 mg dex, monthly Zometa for 6 months. Next doctor's appointment is 3/25. Will call doc on Monday.
What treatment can I expect? Is this something of an emergency nature?
Things were going so good ... s%^t
What treatment can I expect? Is this something of an emergency nature?
Things were going so good ... s%^t
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Waldopepper - Name: Wayne m
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: Strange lumps/cysts on back and neck
Well we had the pet scan scheduled but couldn't make it. She had severe abdominal pain. Thought it had been constipation, but it became intolerable and we ended up in the ER on Fri. After a CT and MRI, doctors concluded she had a multiple myeloma mass located in the head of the pancreas, plus multiple nodules located throughout her abdomen.
I'm at a loss. Not sure what to think and very disappointed in her doctors. Her oncologist says he can't see her until Monday! I read so many stories. Please tell me there's hope.
I'm at a loss. Not sure what to think and very disappointed in her doctors. Her oncologist says he can't see her until Monday! I read so many stories. Please tell me there's hope.
Re: Strange lumps/cysts on back and neck
Dear Grizabella,
I am sorry to hear that your sister is having such a rough time. It sounds as though she has extramedullary spread of her multiple myeloma. Basically, what that means is that it has developed the ability to grow outside of the confines of the bone marrow environment. This is typically an indicator of a more aggressive version of multiple myeloma that acquires resistance to different treatments quite quickly.
Depending on your sister's age and other medical conditions, I like the carfilzomib (Kyprolis), pomalidomide (Pomalyst) and dexamethasone combination in this situation. Cyclophosphamide + dexamethasone + pomalyst OR kyprolis would be another choice. We would also consider a treatment like VDT-PACE, but this is very difficult to handle. I would only consider this option if she is young and otherwise quite healthy. I typically only advocate using this if there is a viable, less toxic alternative to switch to once disease control has been re-established.
Hang in there!
Pete V.
I am sorry to hear that your sister is having such a rough time. It sounds as though she has extramedullary spread of her multiple myeloma. Basically, what that means is that it has developed the ability to grow outside of the confines of the bone marrow environment. This is typically an indicator of a more aggressive version of multiple myeloma that acquires resistance to different treatments quite quickly.
Depending on your sister's age and other medical conditions, I like the carfilzomib (Kyprolis), pomalidomide (Pomalyst) and dexamethasone combination in this situation. Cyclophosphamide + dexamethasone + pomalyst OR kyprolis would be another choice. We would also consider a treatment like VDT-PACE, but this is very difficult to handle. I would only consider this option if she is young and otherwise quite healthy. I typically only advocate using this if there is a viable, less toxic alternative to switch to once disease control has been re-established.
Hang in there!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
13 posts
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