In September of last year my mom was in pain. She lived a state away from me, but it was only a 45-minute drive. She is a strong woman who worked as a senior security guard at a casino, so when she said she was in pain, it was the real deal. After I forced her to go to the emergency room, they said she had a urinary tract infection. Mind you she was incapable of walking at this point. Forty eight hours later she was admitted to the hospital with abnormal platelet levels, Four transfusions later she was released.
I moved her home with myself and two daughters because I just knew something was not OK, within 36 hour I receive a call that her protein levels are off (from a low income clinic doctor) and take her to the emergency room where I live. Two hours later we found out she had multiple myeloma.
I am a single mother, a daughter, a strong woman, but I was not prepared for this. Stage 3. You might want to call hospice. No one was able to wrap their minds around the fight we had coming. So they all committed to "be there" when they thought it would be a short run. But as fair weather friends and family go, it lasted a while. It was her and I against all odds. Tears were for the shower because we were in it. I go on a trip for my 40th birthday (3 days with a tight schedule of friends and caregivers) and get my first tattoo with something that,will make her smile. Through the sick, frustration, groans, MRSA, hospital stays, days off work, depression (both of us), anger, laughter, we found hope.
She made it through her stem cell transplant like a unicorn. She hit remission, we found her a great place (she is a very independent woman).
Six months, six months, and it's back. Why, why why?!? Thanksgiving, the fun and wine are flowing, I get told (the last one to know), and I am shocked, hurt, mad. Not one single one of these selfish other people were there. Not one. Maybe she wants to give them a chance to redeem themselves, maybe she wants me to forgive them. Day one, and two have already not shown for a two-hour trip.
That is a lot of info, I just don't know how to deal with relapse and a whole new round of treatment and everything else that goes with it.
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Re: How to cope with relapse?
Hello All the strength,
Welcome to the forum and I hope you can find some answers here to any questions. I am sorry that your mother has been through such an awful time with myeloma so far. It seems that you are a terrific caregiver and really help her very much. As a mother with daughters myself, I know just how much that means!!
I guess that the nature of myeloma is that it isn't really curable for most patients. Thus I would think that your hematologist would be starting more treatments for Mom. If you try to keep a clear head about all of this, it would be easier to analyze what the options are too. Many patients relapse and then take more treatments to get them back into a remission. Some examples of drugs used for that are Revlimid, Velcade, Kyprolis , along with others such as dexamethasone, cyclophosphamide, etc. There really are a lot of treatments now for myeloma patients, more than there were even a decade ago.
Good luck and you shouldn't hesitate to ask questions here if you have ones that haven't already been asked in previous discussions (use the search box and one or two keywords to find existing discussions on just about any topic; also, this post has helpful links to existing discussions on treatment-related issues).
Welcome to the forum and I hope you can find some answers here to any questions. I am sorry that your mother has been through such an awful time with myeloma so far. It seems that you are a terrific caregiver and really help her very much. As a mother with daughters myself, I know just how much that means!!
I guess that the nature of myeloma is that it isn't really curable for most patients. Thus I would think that your hematologist would be starting more treatments for Mom. If you try to keep a clear head about all of this, it would be easier to analyze what the options are too. Many patients relapse and then take more treatments to get them back into a remission. Some examples of drugs used for that are Revlimid, Velcade, Kyprolis , along with others such as dexamethasone, cyclophosphamide, etc. There really are a lot of treatments now for myeloma patients, more than there were even a decade ago.
Good luck and you shouldn't hesitate to ask questions here if you have ones that haven't already been asked in previous discussions (use the search box and one or two keywords to find existing discussions on just about any topic; also, this post has helpful links to existing discussions on treatment-related issues).
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How to cope with relapse?
Hi Allthestrength -
For what it's worth, I'll just add something to what Diana posted. I recently came across a study of myeloma patients regarding the psychological aspects of relapse. This is important because it is typical for us to get treated, go into remission for some period of time, relapse, and then start the cycle over again. According to the study, the vast majority of patients reported that the first relapse was the most emotionally devastating. Given that your mother is the patient, it seems reasonable that this would be equally devastating for you. So I guess what you're feeling is completely understandable, and the lack of support from some others whom you expect it from can only make it worse.
As Diana said, your mom will likely start a different therapy from what she was on before. I very much hope that it brings her a long and healthy remission.
For what it's worth, I'll just add something to what Diana posted. I recently came across a study of myeloma patients regarding the psychological aspects of relapse. This is important because it is typical for us to get treated, go into remission for some period of time, relapse, and then start the cycle over again. According to the study, the vast majority of patients reported that the first relapse was the most emotionally devastating. Given that your mother is the patient, it seems reasonable that this would be equally devastating for you. So I guess what you're feeling is completely understandable, and the lack of support from some others whom you expect it from can only make it worse.
As Diana said, your mom will likely start a different therapy from what she was on before. I very much hope that it brings her a long and healthy remission.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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