Hi everyone,
My sister has been enjoying remission following her last treatment of scar tissue plasmacytoma several months ago. She is on maintenance therapy with Velcade, Revlimid, and dexamethasone. She has recently done a full range of tests, including bone marrow biopsy. No M-spike was detected and no myeloma in the bone marrow. Her doctor commented that some of her blood proteins were out of range, but nothing to worry about. They have reduced her daily Revlimid of 25 mg to taking the same dose every other day.
She has been feeling really well, but this morning woke up with a sharp pain in her hip. She now cannot step on that leg and the pain has gotten even worse towards evening. It is now painful even when she lies down. She is worried that it may be another relapse. She will see a doctor tomorrow to check it out, but I appreciate any thoughts or perspectives on the issue. Thank you.
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6 posts
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Sudden sharp hip pain while in complete remission
Hi Gala,
I was wondering how your sister was doing. What did the doctor say?
I was wondering how your sister was doing. What did the doctor say?
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Sudden sharp hip pain while in complete remission
Hi, Eileen.
Thank you for checking on my sister. She decided to wait with the doctor's visit and instead applied an anti-inflammatory ointment to the painful site. After a couple of days the pain stopped, and she can now walk normally. She says she does not feel anything, except when sitting down she can still feel something, not pain, but slight discomfort. I wish she had got it checked out properly, but I cannot make her. If there is a development, I'll update here.
Thank you for checking on my sister. She decided to wait with the doctor's visit and instead applied an anti-inflammatory ointment to the painful site. After a couple of days the pain stopped, and she can now walk normally. She says she does not feel anything, except when sitting down she can still feel something, not pain, but slight discomfort. I wish she had got it checked out properly, but I cannot make her. If there is a development, I'll update here.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Sudden sharp hip pain while in complete remission
Hi Gala,
I'm sure you would have felt better if she went to the doctor, but she is probably scared to hear what they might say. I am only just in the beginning of my journey (smoldering), but understand the mental game. I also suffer from Crohn's disease, so I have lived with a chronic disease for quite some time, and know that at times, my choices for managing that often conflicted with what my sister would have liked to see. But sometimes you just want to hold out to have a sense of "control" of the situation.
I hope that if the issue persists, your sister will decide to seek a doctor's input. Keep us updated.
I'm sure you would have felt better if she went to the doctor, but she is probably scared to hear what they might say. I am only just in the beginning of my journey (smoldering), but understand the mental game. I also suffer from Crohn's disease, so I have lived with a chronic disease for quite some time, and know that at times, my choices for managing that often conflicted with what my sister would have liked to see. But sometimes you just want to hold out to have a sense of "control" of the situation.
I hope that if the issue persists, your sister will decide to seek a doctor's input. Keep us updated.
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Sudden sharp hip pain while in complete remission
Hi Eileen,
Thank you for your input. Yes, I definitely understand the mental game and the fear. My sister's pain does not seem to bother her any more at this point. She is fairly stable, but struggling with low WBC, so from this week on she is going on a different treatment regimen, which is fortnightly, rather than 28-day cycles. We'll see how this goes.
It is all very worrying and has been difficult for her. Hopefully, she and her doctor will find the best combination of drugs to stay in remission with a decent quality of life.
All the best to you in your journey.
Thank you for your input. Yes, I definitely understand the mental game and the fear. My sister's pain does not seem to bother her any more at this point. She is fairly stable, but struggling with low WBC, so from this week on she is going on a different treatment regimen, which is fortnightly, rather than 28-day cycles. We'll see how this goes.
It is all very worrying and has been difficult for her. Hopefully, she and her doctor will find the best combination of drugs to stay in remission with a decent quality of life.
All the best to you in your journey.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Sudden sharp hip pain while in complete remission
Hi everyone,
Just an update. My sister's bone pain came back and was besides her hip and lower back, also in the rib cage. Scans showed new lesions on a rib, sacrum, and hip bone and soft tissue proliferation in the hip area. She is going to be hospitalized on the 5th of February to receive cisplatin-based treatment, possibly DCEP, as a bridging therapy. They are then planning to put her on Darzalex in combination with dexamethasone and either Velcade or Revlimid. Darzalex may not be available, though, as it has just been approved in Russia and is very carefully rationed. We will have to see. She has been progression-free for 8 months following her last treatment for a cutaneous plasmacytoma.
I feel that anyone who has any new pain while in remission should go and get it checked out as soon as possible.
Just an update. My sister's bone pain came back and was besides her hip and lower back, also in the rib cage. Scans showed new lesions on a rib, sacrum, and hip bone and soft tissue proliferation in the hip area. She is going to be hospitalized on the 5th of February to receive cisplatin-based treatment, possibly DCEP, as a bridging therapy. They are then planning to put her on Darzalex in combination with dexamethasone and either Velcade or Revlimid. Darzalex may not be available, though, as it has just been approved in Russia and is very carefully rationed. We will have to see. She has been progression-free for 8 months following her last treatment for a cutaneous plasmacytoma.
I feel that anyone who has any new pain while in remission should go and get it checked out as soon as possible.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
6 posts
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