In January our daughter had radiation for a plasmacytoma near her eye, which worked well. She was checked to see if she had others and did not.
She began wheezing over the 4th of July weekend and we went to Penn on Monday for a regular appointment, where they decided to take a CT scan. The whirlwind began, being sent to Penn ER and ending up in the operating room to have a tracheotomy. Apparently, she has a couple other plasymacytomas in her body. Now she is receiving high-dose chemo to shrink the tumors.
We are so frightened. I knew about plasmacytomas, but never knew something like this could happen. Has anyone else experienced anything like this?
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Re: Plasmacytoma leading to surgery & high-dose chemotherapy
I'm sorry to hear that your daughter is having such a hard time with plasmacytomas. I don't have any experience with them, but know that status with myeloma can change really quickly. I pray that the chemo that she is being given works well in shrinking the tumors.
Keep us informed on how she is doing,
Nancy in Phila
Keep us informed on how she is doing,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
.." Like this"...Means what ?
I had a Walnut sized plasmacytoma removed from what was left of my left Frontal sinus in May 2012, with a large skeletal /orbital re-construction. I also had Tumors in right rib (7th) and on the superior pole of infra-orbital rim of Pelvis. Surgery, radiation (extensive), chemo, and maintenance...and more surgery.
Did you have specific questions ? The development of plasmacytomas in the maxillary / ethmoid sinus's are not rare. In the Frontal sinus--that is more rare. Quite a few articles discuss tumors developing in the face/ orbits....and their presentation, treatment, and course.
Good luck.
I had a Walnut sized plasmacytoma removed from what was left of my left Frontal sinus in May 2012, with a large skeletal /orbital re-construction. I also had Tumors in right rib (7th) and on the superior pole of infra-orbital rim of Pelvis. Surgery, radiation (extensive), chemo, and maintenance...and more surgery.
Did you have specific questions ? The development of plasmacytomas in the maxillary / ethmoid sinus's are not rare. In the Frontal sinus--that is more rare. Quite a few articles discuss tumors developing in the face/ orbits....and their presentation, treatment, and course.
Good luck.
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Rneb
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
I had a large plasmacytoma which led to my initial diagnosis. I had chemo to shrink it and then radiation, which was successful. I also had auto and allo transplants. My understanding is that plasmacytomas do tend to come back, so aggressive treatment is appropriate.
I hope your daughter does well with her treatment. I was told that surgery was not appropriate in my case because of the risk that it would spread my plasmacytoma.
I know how confusing all this is and wish your daughter well. I'm in remission now and doing well.
Good luck.
Karen
I hope your daughter does well with her treatment. I was told that surgery was not appropriate in my case because of the risk that it would spread my plasmacytoma.
I know how confusing all this is and wish your daughter well. I'm in remission now and doing well.
Good luck.
Karen
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karenh - Name: Karen Hendrickson
- Who do you know with myeloma?: myself
- Age at diagnosis: 59
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
Terrij,
If you don't mind me asking, what types of chemo drugs do the doctors have your daughter on and are these specifically aimed at reducing the size or eliminating the plasmacytomas?
Thanks, Spirit
If you don't mind me asking, what types of chemo drugs do the doctors have your daughter on and are these specifically aimed at reducing the size or eliminating the plasmacytomas?
Thanks, Spirit
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
Terri - I'm very sorry to hear about what has happened with your daughter. I hope that she is responding well to the treatment she's receiving.
If you haven't seen the news already, daratumumab is now available through an "expanded access program" that's intended to serve patients exactly like your daughter. If your daughter's doctors have not already discussed the program with her, and attempted to get her enrolled in it, I think it's an option you may want to raise with them. See this article for more details about the program:
https://myelomabeacon.org/news/2015/07/07/daratumumab-expanded-access-program/
Spirit - One of the aspects of this community that really makes it a community is that its members, for the most part, treat it as a two-way street. They ask questions, but they also share experiences and/or advice.
So, instead of asking Terri, who is looking for advice and perspectives from others who have been through what her daughter has been through, what treatment her daughter is receiving, it would have been helpful to her if, before you'd asked that question, you'd taken a few extra minutes to share with her your own experiences.
You've been through a situation similar to her daughters, as you describe in this thread,
https://myelomabeacon.org/forum/plasmacytomas-occurring-after-rvd-induction-t5645.html
Why not, at a minimum, point it out to her, or, even better, share what you've learned and the advice and information you were given by your doctors? It would be so helpful to Terri, whose family has been through so much, and also to others who in the future might need similar information.
If you haven't seen the news already, daratumumab is now available through an "expanded access program" that's intended to serve patients exactly like your daughter. If your daughter's doctors have not already discussed the program with her, and attempted to get her enrolled in it, I think it's an option you may want to raise with them. See this article for more details about the program:
https://myelomabeacon.org/news/2015/07/07/daratumumab-expanded-access-program/
Spirit - One of the aspects of this community that really makes it a community is that its members, for the most part, treat it as a two-way street. They ask questions, but they also share experiences and/or advice.
So, instead of asking Terri, who is looking for advice and perspectives from others who have been through what her daughter has been through, what treatment her daughter is receiving, it would have been helpful to her if, before you'd asked that question, you'd taken a few extra minutes to share with her your own experiences.
You've been through a situation similar to her daughters, as you describe in this thread,
https://myelomabeacon.org/forum/plasmacytomas-occurring-after-rvd-induction-t5645.html
Why not, at a minimum, point it out to her, or, even better, share what you've learned and the advice and information you were given by your doctors? It would be so helpful to Terri, whose family has been through so much, and also to others who in the future might need similar information.
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
Thank you for your replies. Our daughter is home from the hospital. She has a tracheostomy until the tumor shrinks. She will probably do another high-dose chemo round of doxorubicin, etoposide, Cytoxan & dex. We have been through high-dose chemo before in November and have had some hard side effects and problems. We have our fingers crossed that that will not happen.
The shock of having an emergency tracheotomy is still overwhelming. Hopefully treatment will shrink the placytoma and lower the myeloma numbers.
Penn's treatment plan is to do a clinical trial of T-cell infusions. Daratumumab is also on the table. Allo transplant with her brother as half match at this point is extremely risky and unlikely to be successful but is a last resort.
So that is the update. All depends on the tumor shrinking & myeloma numbers coming down. We can't think ahead right now just take each step one at a time.
The shock of having an emergency tracheotomy is still overwhelming. Hopefully treatment will shrink the placytoma and lower the myeloma numbers.
Penn's treatment plan is to do a clinical trial of T-cell infusions. Daratumumab is also on the table. Allo transplant with her brother as half match at this point is extremely risky and unlikely to be successful but is a last resort.
So that is the update. All depends on the tumor shrinking & myeloma numbers coming down. We can't think ahead right now just take each step one at a time.
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
Hello Terry:
I have no advise for you, but I just wanted to say God Bless your whole family, and I hope that the fantastic Doctors at Penn can help you all get through this. All the Best. JPC
I have no advise for you, but I just wanted to say God Bless your whole family, and I hope that the fantastic Doctors at Penn can help you all get through this. All the Best. JPC
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JPC - Name: JPC
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
Thank you Terrij for your reply. We are praying your daughter has a quick response to the meds the doctor has prescribed. I have posted about Plasmacytomas on this forum in the past but there is not much personal experience being shared about this topic, but mostly just sharing links to articles that many of us have already googled. Maybe this is because plasmacytomas are rare even among Multiple Myeloma patients. I currently have multiple plasmacytomas that came on in a 5 week period I was taken off RVD preparing for a stem cell transplant. My doctor put me back on a cycle of RVD and I continued to develop plasmacytomas so my meds were changed. I am currently on Kyprolis, Pomalyst, Cytoxin and Dexamethasome. Being non-secreatory, I won't know until a PET Scan at the end of August if this combo of meds is working. Very nerve wracking to say the least. Thank you for sharing the meds your daughter has been prescribed. I plan to write them down and talk to my hematologist about them at my best visit. Best wishes to your family.
Spirit
Spirit
Re: Plasmacytoma leading to surgery & high-dose chemotherapy
Hello Spirit: Although I did not say it in my prior post, (I am sorry), my sentiments apply to you equally. Best of luck to you. JPC
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JPC - Name: JPC
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