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Re: ~*~Can you please share your story~*~
my dan was diagnoised middle of july this year, after several trips to the local doc, with severe lower back pain, trouble walking, (painful), numb right foot, very very tired, trouble passing urine, blood present in tools. he was referred to hospital for mri scan after 4th visit to doc's in one week which showed a mass on his lower spine. i was devestated!!! blood tests showed very high calcium and protein levels and kidney function very high (400 ) biopsy was multi myeloma stage 3. ct scan showed up 4 tumours, his just finished cycle 3 of val and dex, with no response (yet) his in constant pain, can't sleep, hip pain, gron pain. constapation. he says his body feels really stiff, like his run a marathon.. we are seeing his consultant 21st sept, chemo will start again and his booked in for mri scan, also last mouth he started bone strenghening treatment. i'm always worred and hate seeing him in pain, i feel helpless. i 'm hopeing a cure can be found very soon.... dan's only 41, his had back pain for years...
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wanda and dan - Name: wanda and dan
- Who do you know with myeloma?: partner dan
- When were you/they diagnosed?: 41
- Age at diagnosis: 41
Re: ~*~Can you please share your story~*~
Hi wanda and dan,
Wow! My prayers are with you and your husband. I know it's devastating to be diagnosed with such a disease but good to know to get through it with a good fight. I have MGUS, anemia and experiencing back pains on and off from dull to moderate. It's the "watch and wait" for me that drives me insane. I want to know not wait and see. So your husband is in my prayers. Always keep him positive and keep the faith.
Wow! My prayers are with you and your husband. I know it's devastating to be diagnosed with such a disease but good to know to get through it with a good fight. I have MGUS, anemia and experiencing back pains on and off from dull to moderate. It's the "watch and wait" for me that drives me insane. I want to know not wait and see. So your husband is in my prayers. Always keep him positive and keep the faith.
Re: ~*~Can you please share your story~*~
Hi Wanda and Dan;
I have a plasmacytoma (single lesion) in my sacrum. I understand the hip, groin, back pain, it also felt like I had a golf ball under my right heel. My bloodwork as far as calcium and white blood cells etc. are all good so far and my M spike is only 4g/l. I have gone through 5 weeks of radiation. My M spike hasn't dropped at all. My pain has gotten worse over the 4 weeks since my last radiation treatment. I'm 43 with 3 young children. I understand the fear and the years of pain. I try to hold on to the fact that it is now known and being treated. The other thing I try to remind myself is that the statistics are generally made up of older people who may not have been as healthy to begin with so maybe it will go better for me......and Dan too. My thoughts and prayers are with you. Hold on to each other and be strong!
I have a plasmacytoma (single lesion) in my sacrum. I understand the hip, groin, back pain, it also felt like I had a golf ball under my right heel. My bloodwork as far as calcium and white blood cells etc. are all good so far and my M spike is only 4g/l. I have gone through 5 weeks of radiation. My M spike hasn't dropped at all. My pain has gotten worse over the 4 weeks since my last radiation treatment. I'm 43 with 3 young children. I understand the fear and the years of pain. I try to hold on to the fact that it is now known and being treated. The other thing I try to remind myself is that the statistics are generally made up of older people who may not have been as healthy to begin with so maybe it will go better for me......and Dan too. My thoughts and prayers are with you. Hold on to each other and be strong!
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Ger - Name: Ger
- Who do you know with myeloma?: Myself Multiple myeloma
- When were you/they diagnosed?: July 16, 2012
- Age at diagnosis: 43
Re: ~*~Can you please share your story~*~
Hi Ger :
Can you please expand on your statement on the feeling of having a golf ball under your right heel - is this a hard lump , very fluid or more like its made of jelly ? my reason for the inquiery is I am having similar feelings on the bottom of both my feet - these jelly like - Bullous lumps- ( my oncologists description) are all over the bottoms of my feet & make walking quite difficult- have you had any thing done about your golf ball ? N.G.
Can you please expand on your statement on the feeling of having a golf ball under your right heel - is this a hard lump , very fluid or more like its made of jelly ? my reason for the inquiery is I am having similar feelings on the bottom of both my feet - these jelly like - Bullous lumps- ( my oncologists description) are all over the bottoms of my feet & make walking quite difficult- have you had any thing done about your golf ball ? N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: ~*~Can you please share your story~*~
Hi Nipon Ginko;
The golf ball under my heel is just what it feels like. There is nothing there. No abnormality on the heel at all. Just a feeling and that was the best way to descripe it, sorry for the confusion.
The golf ball under my heel is just what it feels like. There is nothing there. No abnormality on the heel at all. Just a feeling and that was the best way to descripe it, sorry for the confusion.
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Ger - Name: Ger
- Who do you know with myeloma?: Myself Multiple myeloma
- When were you/they diagnosed?: July 16, 2012
- Age at diagnosis: 43
Re: ~*~Can you please share your story~*~
Hi ALL,
Just wanted to respond to queries I have received about the C-RP test.
First, I want to say that the C-RP is NOT diagnostic for multiple myeloma. I wanted the test because it shows inflammatory response and specifically my focus was myocardial necrosis. That was not found.
However, the C-RP test is typically part of a panel that is called Comprehensive Metabolic Panel. IOW's if you order C-RP there are a whole lot of other proteins that are measured as well. Specifically you get your globulins along with albumin and total protein(TP). The physician when she received my results knew the TP was out of whack, the c-RP happened to be exceptionally high.
As a result of the TP being high that meant she ordered an SPEP to determine what the specific protein was that was out of whack.
The SPEP results were what were diagnostic for MGUS, ergo she sent me to the hem/onc for further tests, who ordered the BM and aspirate, along with X-rays, and those results were diagnostic for multiple myeloma.
However, the SPEP would not ever have been ordered had I not insisted on the C-RP initially. Especially since I did not have any of the CRAB but the B! This is what has seriously confounded me, personally, since my skull was full of lytic lesions...yet no hypercalcemia, no renal problems and no anemia!! All of which are blessings and points to the serendipitous nature of my diagnosis. Completely out the blue!
In terms of MGUS/multiple myeloma screening, my suggestion would be that whenever you go for annual physical, have the physician order a TP test...that way if any proteins are out of whack they will order additional tests which will specify what protein it is. If it is multiple myeloma it will show up as M spike.
Hope this helps.
Wishing everyone well and praying that you are healthy and happy in spirit.
Just wanted to respond to queries I have received about the C-RP test.
First, I want to say that the C-RP is NOT diagnostic for multiple myeloma. I wanted the test because it shows inflammatory response and specifically my focus was myocardial necrosis. That was not found.
However, the C-RP test is typically part of a panel that is called Comprehensive Metabolic Panel. IOW's if you order C-RP there are a whole lot of other proteins that are measured as well. Specifically you get your globulins along with albumin and total protein(TP). The physician when she received my results knew the TP was out of whack, the c-RP happened to be exceptionally high.
As a result of the TP being high that meant she ordered an SPEP to determine what the specific protein was that was out of whack.
The SPEP results were what were diagnostic for MGUS, ergo she sent me to the hem/onc for further tests, who ordered the BM and aspirate, along with X-rays, and those results were diagnostic for multiple myeloma.
However, the SPEP would not ever have been ordered had I not insisted on the C-RP initially. Especially since I did not have any of the CRAB but the B! This is what has seriously confounded me, personally, since my skull was full of lytic lesions...yet no hypercalcemia, no renal problems and no anemia!! All of which are blessings and points to the serendipitous nature of my diagnosis. Completely out the blue!
In terms of MGUS/multiple myeloma screening, my suggestion would be that whenever you go for annual physical, have the physician order a TP test...that way if any proteins are out of whack they will order additional tests which will specify what protein it is. If it is multiple myeloma it will show up as M spike.
Hope this helps.
Wishing everyone well and praying that you are healthy and happy in spirit.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: ~*~Can you please share your story~*~
Wanda and Dan, praying that your doctor visit today provided some answers for you. Wanda, I completely understand how you feel watching Dan in pain. The one thing I can tell you is to make time for you. When my husband was first diagnosed, I made sure that I took time for walks by myself just to collect my thoughts and take a breather.
You will be in my thoughts and prayers.
You will be in my thoughts and prayers.
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Marie64 - Name: Marie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 45
Re: ~*~Can you please share your story~*~
hi everyone, thank you yvie dee, ger and marie for your replies and support,
dan and i were up the hospital all day last friday, seeing the consultant, all was very encouraging as there is a slight response to the Velcade.. which is continueing with the dex til we visit again on 12th oct. dan is still not sleeping at all well, the pain in his lower back is really bad, he has cut back on the morphine cause of the constupation, pain or constupation is what he says to me??? i answer, there both not nice........
gerr you mention a golf ball in your foot, dan experiances that too, but in his toes and says they feel numb, i'm not worried about standing on his toes anymore as i tell him you can't feel that anyway.... lol...
dan had a blood transfusion yesturday cause his red blood count was low, i take it this is normal with having chemo???
also, does anyone else out there claim DLA, we've not filled in the form yet as not sure wether dan will get it, help from anyone please.........
dan and i were up the hospital all day last friday, seeing the consultant, all was very encouraging as there is a slight response to the Velcade..
which is continueing with the dex til we visit again on 12th oct. dan is still not sleeping at all well, the pain in his lower back is really bad, he has cut back on the morphine cause of the constupation, pain or constupation is what he says to me??? i answer, there both not nice........gerr you mention a golf ball in your foot, dan experiances that too, but in his toes and says they feel numb, i'm not worried about standing on his toes anymore as i tell him you can't feel that anyway.... lol...
dan had a blood transfusion yesturday cause his red blood count was low, i take it this is normal with having chemo???
also, does anyone else out there claim DLA, we've not filled in the form yet as not sure wether dan will get it, help from anyone please.........
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wanda and dan - Name: wanda and dan
- Who do you know with myeloma?: partner dan
- When were you/they diagnosed?: 41
- Age at diagnosis: 41
Re: ~*~Can you please share your story~*~
Hi Wanda and Dan.
You will definitely be in my prayers. Thank God for the support system here. I pray that pain goes away so he can rest. As far as the DSL papers, I can't help you with that since I haven't reached that point in my life but I'm sure there is someone here that can help with that.
You will definitely be in my prayers. Thank God for the support system here. I pray that pain goes away so he can rest. As far as the DSL papers, I can't help you with that since I haven't reached that point in my life but I'm sure there is someone here that can help with that.
Re: ~*~Can you please share your story~*~
hello everyone, dan and i were up the hospital on friday to see his consultant and start 5th cycle of val, but unfortunately val is not working and his bloods came back all raised... (light chain and paraproteins) his having a biopsy on monday to see what the cancer is doing?? and the following friday starting thalidomide? treatment. (sorry about the spelling, but i'm sure you know wot i mean) were keeping positive, as always, but dan still has lots of pain in his back , legs and groin. really hoping that he can get in remission from the next chemo....
thank you everyone for your support, means so much..xx .
thank you everyone for your support, means so much..xx .
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wanda and dan - Name: wanda and dan
- Who do you know with myeloma?: partner dan
- When were you/they diagnosed?: 41
- Age at diagnosis: 41