I am not sure what is normal, or is there even a normal thought process to this. Right now i get check up's every 6 months. I just wonder how some of you all deal with it? Does every little ache and pain make you wonder. When your tired and sore do you think its back?
I sometimes worry about i hate to cry wolf. Its been hard to figure whats what sometimes. I know i push myself and maybe some issues. Sometimes reading stuff makes me feel so bad because I feel like i am complaining and then I see what a lot of you are going through.
I wish so much God would touch you all and heal you. Sorry for the rant, just been down a little bit and worrying a tad
Forums
Re: Question do you think about multiple myeloma if your in
I am not in remission, but I am always fearful that the treatment has stopped working, even when I get regular blood work. Wish I could stop worrying, but I don't think I ever will. 
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kaywheeler
Re: Question do you think about multiple myeloma if your in
All the time... Have Stage III light chain multiple myeloma. SCT in 2007. Not on treatment (other than Pamidronate monthly)... Recent have had a lot of rib and back pain, but MRI was all clear. Immune system almost nonexistent - I catch anything and everything out there. Remission? Not sure, Worry about every little ache and pain? Absolutely. There isn't a day that goes by without thinking about it.
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Babs
Re: Question do you think about multiple myeloma if your in
Have been in remission for 6 months. And yes I worry about every ache. Never want to be in that pain again. Had a stem cell harvest in April and pray everyday that my numbers stay down. Right now I am on Revlimid 25mg and Zemeta IV one a month. Last PET scan came back clear so feel a bit more secure that all will be fine,
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morrow1022
Re: Question do you think about multiple myeloma if your in
I am getting ready to end my 7th year since diagnoses, and it was something that popped into my mind every time I had a pain. But my blood is checked every month, urine every couple of months, and a full check up every 6 months. So I don't really think about it anymore because the tests will show it coming back before the pain returns. I also still work, and keep my self busy with my hobbies. Last is my dog, he keeps me happy and laughing.
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tgarciajones
Re: Question do you think about multiple myeloma if your in
Since there's really no "true" remission for Multiple Myeloma a day doesn't go by that I don't think about my health issues but I don't let it burden me. I completed my VRD chemotherapy after being on it for 6 months. IMO, it comes down to faith. I've seen people be diagnosed in stage 2 of a cancer and completely give up on things and they didn't survive as a result. I've seen people be diagnosed in stage 4 and achieve remission for their cancer.
For myself, I had to do two things during chemotherapy to deal with the reality of my situation. One, to reaffirm my faith and secondly, accept my mortality. That in and of itself is daunting. No one wants to leave the party early. I had to believe that were it my time, it's not necessarily a bad thing. But then it all comes back to faith. And that faith sustains me now. Sure, my myeloma can return and in all probabilty will but until then I enjoy life rather than lamenting it's ending. Each and every day is a gift to me in my mind. I'm aware of my situation but I don't obsess about it, much like the reality of possibly getting hit by a car while crossing the street doesn't burden the average person. As long as I remember that each day is truly a gift and is as great a gift that one can be given then it all stays in perspective. Today my myeloma count is so low it can't be registered and I see my oncologist monthly. I focus on that part rather than the finality of it all.
I've also become a pretty decent cook now. I'm no Bobby Flay but I get by.
For myself, I had to do two things during chemotherapy to deal with the reality of my situation. One, to reaffirm my faith and secondly, accept my mortality. That in and of itself is daunting. No one wants to leave the party early. I had to believe that were it my time, it's not necessarily a bad thing. But then it all comes back to faith. And that faith sustains me now. Sure, my myeloma can return and in all probabilty will but until then I enjoy life rather than lamenting it's ending. Each and every day is a gift to me in my mind. I'm aware of my situation but I don't obsess about it, much like the reality of possibly getting hit by a car while crossing the street doesn't burden the average person. As long as I remember that each day is truly a gift and is as great a gift that one can be given then it all stays in perspective. Today my myeloma count is so low it can't be registered and I see my oncologist monthly. I focus on that part rather than the finality of it all.
I've also become a pretty decent cook now. I'm no Bobby Flay but I get by.
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John Fabian
Re: Question do you think about multiple myeloma if your in
I was diagnosed with metastatic prostate cancer in Dec. of 2010. After 6 mo. of treatment for that disease some with experimental chemo, I was rediagnosed as having multiple myeloma. Have not been able to discern if he bone lesions are from the prostate or multiple myeloma cancer. Had a complete response to the multiple myeloma treatment and am now in remission using Revlimid on a 21 day on 7 day off schedule. Almost every cycle I must wait 7-10 days longer for my blood count to recover. Hormone treatments have kept the prostate cancer in check. Am now trying to decide if I should have prostate surgery as it may be that it is not metastatic and could be operable. No there hasn't been a day or a waking hour that has past in the last two years that I haven't thought about my diseases. Should I have had prostate surgery sooner? Did I in appropriately handle some chemicals which caused my multiple myeloma?
Is my neuropathy going to subside and will I be able to walk if I must go back on a drug like Velcade? Yes worry is a part of my daily routine, And yet I enjoy being with my spouse who has been extremely supportive. My grandchildren who each spend a week with us in the summer and we get to know them as individuals. My woodturning club from which I learn new techniques each month etc. etc. etc. worry is a part of life I guess. I try to focus on only those things I can affect, and then act rather than worry.
Is my neuropathy going to subside and will I be able to walk if I must go back on a drug like Velcade? Yes worry is a part of my daily routine, And yet I enjoy being with my spouse who has been extremely supportive. My grandchildren who each spend a week with us in the summer and we get to know them as individuals. My woodturning club from which I learn new techniques each month etc. etc. etc. worry is a part of life I guess. I try to focus on only those things I can affect, and then act rather than worry.
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Knlday
Re: Question do you think about multiple myeloma if your in
I am glad to discover this group! and Karen's article resounded with me. Although I am older and on this journey since Oct. 09...and have done so many of the similar treatments,, I have been "stable" for over 2 yrs. To answer the question is very hard....I actually say I have this cancer but I don't seem to believe it . I go about each day being grateful ....that I can spend more time with my family, friends and just the natural surroundings. I am an artist and create pleasant paintings that hopefully create a sense of joy. When I was first diagnosed during my Velcade stage, I was extremely ill...people asked if I would be painting how I felt...I picked up the dark colors, but couldn't do anything with them; instead I started a new series called "looking on the Bright side". And I have tried to do just that....each morning the pain is harsh and difficult so i have a little "pity party with myself" serving up a morning coffee and salty tears...somehow each day that's all that is needed to jump start myself into a fun and rewarding day...still thankful for the very breath that I am given. So....I seem to react to the pain but not the myeloma... and whenever possible I will search out fun; in color, nature, music, and people...I love the sound of laughter and the person that I laugh most at is myself.... I am lucky because I do some old " flower-child" granny kinds of things... I hope that we will all get a chance each day to laugh or smile or hum a little .Bless us!
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JOG
Re: Question do you think about multiple myeloma if your in
Awhile back I was talking to my local oncologist and she was saying multiple myeloma is a "s––t" of a disease. I replied that yes it is (I think we all can agree) but right from the start I knew that it was never going to go away. I told her that I didn't think I had as much anxiety as I would have if I had a different cancer (but who knows). Other types of cancer may have a cure but how safe would you feel if the doctors told you you were cured, I think I would worry that it would come back. Did they get everything? Has it spread? With multiple myeloma the possibility of progression is always there, I guess I expect in the future I will come out of remission at some stage (hopefully not).
During what I call my treatment stage (the first two years after dx) I could "feel" a pain in my spine when my paraprotein level would be ~ 30g/L or higher. I had a fair idea when treatment either had worked or it hadn't based on that feeling. If my myeloma starts growing again I think my first indication of it will be on a lab report and not due to any pain that I feel. I try not to dwell coming out of remission but I have discussed future treatments with my myeloma specialist so I have an action plan if it happens.
My current focus is trying to get fit so that I can go skiing again (unfortunately I still have lesions in the spine) with my doctors blessing. Don't know whether that will happen.
All the best,
Libby
During what I call my treatment stage (the first two years after dx) I could "feel" a pain in my spine when my paraprotein level would be ~ 30g/L or higher. I had a fair idea when treatment either had worked or it hadn't based on that feeling. If my myeloma starts growing again I think my first indication of it will be on a lab report and not due to any pain that I feel. I try not to dwell coming out of remission but I have discussed future treatments with my myeloma specialist so I have an action plan if it happens.
My current focus is trying to get fit so that I can go skiing again (unfortunately I still have lesions in the spine) with my doctors blessing. Don't know whether that will happen.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Question do you think about multiple myeloma if your in
Hi, I would hazard a guess & say everyone of us has those thoughts! Just yesterday i was talking with my Dr. & said that with this disease one has to be a little paranoid! In the past, i have felt definite bone pain that needed radiation, also some 'mild' bruising that turned out to be a fairly big lesson. One never knows & although it's hard feel you aren't 'crying wolf', at the same time, you need to know what's happening in your body! Ongoing lab tests, xrays/ct scans when called for, ongoing chemo, these all contribute to making one think about this disease every day, but, the trick is to accept that we have it, deal with it all we can & leave the rest up to your Higher Power, then go & enjoy your life.
As i'm typing this, i just got a call to go over to Vancouver (5 hour trip) to get more radiation. In April i had to get radiation on both shoulders, the pelvic bone & my sacral spine, so i guess they missed an area. So i guess i'll be thinking about this disease today!! LOL! It is hard to keep a positive attitude sometimes, but i've got to remember that it will pass & we do actually have calm, peaceful times that are great!!
I was on pomalidomide last year, it was working great, then it started attacking my lungs (a rare occurrence) I've had to stop taking it & only restarted taking Velcade last month. in the interim, the multiple myeloma snuck back
As i'm typing this, i just got a call to go over to Vancouver (5 hour trip) to get more radiation. In April i had to get radiation on both shoulders, the pelvic bone & my sacral spine, so i guess they missed an area. So i guess i'll be thinking about this disease today!! LOL! It is hard to keep a positive attitude sometimes, but i've got to remember that it will pass & we do actually have calm, peaceful times that are great!!
I was on pomalidomide last year, it was working great, then it started attacking my lungs (a rare occurrence) I've had to stop taking it & only restarted taking Velcade last month. in the interim, the multiple myeloma snuck back
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
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