Diagnosed with costochondritis at an urgent care in August 2012 and told to take Motrin. After months of worsening pain and lots of Motrin, my doctor finally took me seriously enough in January 2013 to refer me to a physical medicine doctor who ordered a bone scan. The bone scan revealed multiple bilateral rib fractures (at least 7). That started the ball rolling in January with many tests, ultimately finding the diagnosis of multiple myeloma. The Physician's Assistant called me after my bone marrow biopsy to confirm the diagnosis and told me I had stage IV. I told her I thought there were only 3 stages. She said staging was very hard, but I had stage IV. I guess that means I'm in bad shape.
Ironically, I'm the healthiest person in my office of 10 employees, without a doubt (of course, except for this recent diagnosis). I exercise daily and eat well, 5 ft. 3 in. 120 lbs. I've always had good health, so this has really thrown me for a loop.
I started chemo on February 25th with Revlimid / Velcade / dexamethesone / Aredia, 2 weeks on and 1 week of recovery. Second cycle was interrupted with a 4 day hospital stay for a fever and the Revlimid has been temporarily discontinued. I am hoping to resume the full course of chemo next week in preparation for a stem cell transplant at City of Hope as soon as I get into remission. My pain is significantly better after just 2 cycles of treatment (not even a full 2 cycles since cycle 2 was interrupted). I was told by the PA after cycle 1 that blood tests indicated an exceptionally good response to the chemo and my numbers had improved significantly. That was in the morning and that evening I was hospitalized for 4 days.
I'm beginning to understand the highs and lows very quickly here with this diagnosis and how quickly things can change. My next appointment with my oncologist is April 10th, so hoping to get much more information then. Being treated at Kaiser in Anaheim.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Diagnosed Stage IV February 2013
It is good to hear you are having a good response to the Velcade, Revlimid, dex treatment. Fortunately I was diagnosed with multiple myeloma in less than two weeks after seeing my primary care physician the first time for rib and back pain. I am certain this saved me from months of further bone degeneration. I was in great shape too, doing lots of swimming and cycling. Right now I am in complete remission and on maintenance chemo with Revlimid. I have had to stop taking the drug a few times because of low WBC and getting sick. I have found that while the new drugs for treating myeloma are effective, they are not without their side effects, some of which required hospitalization for me.
I am being treated at Kaiser Riverside and had my stem cell transplant (SCT) at City of Hope in October 2011. I found City of Hope a great place to get the SCT, they have positive pressure isolation rooms built for this purpose and the facility is really nice overall. The rooms and floors are really quite making easier to get sleep. Kaiser has about a half a dozen doctors working at City of Hope doing SCTs. Mine SCT doctor was Dr. Cai and I have had a very good experience with him. I still see him twice a year. You will have the opportunity to enter some of the clinical trials at City of Hope if you wish to. I reviewed the trail options but elected not to enter any.
You are just getting started with treatment and it can be quite a roller coaster ride the first year, and the outcome from you treatment at this point probably still uncertain but you indicated it seems to be going well so far. I can say for me it has all be worth it, I am back to swimming, cycling, and skied several times this year, hang in there.
I am being treated at Kaiser Riverside and had my stem cell transplant (SCT) at City of Hope in October 2011. I found City of Hope a great place to get the SCT, they have positive pressure isolation rooms built for this purpose and the facility is really nice overall. The rooms and floors are really quite making easier to get sleep. Kaiser has about a half a dozen doctors working at City of Hope doing SCTs. Mine SCT doctor was Dr. Cai and I have had a very good experience with him. I still see him twice a year. You will have the opportunity to enter some of the clinical trials at City of Hope if you wish to. I reviewed the trail options but elected not to enter any.
You are just getting started with treatment and it can be quite a roller coaster ride the first year, and the outcome from you treatment at this point probably still uncertain but you indicated it seems to be going well so far. I can say for me it has all be worth it, I am back to swimming, cycling, and skied several times this year, hang in there.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Diagnosed Stage IV February 2013
Thank you for responding! I am so happy to hear from someone being treated at Kaiser and who has been through the SCT at City of Hope. I haven't been given too much information on it as the doctor didn't want to overwhelm me with information on my first 2 visits and remission is my first step.
How long did you stay at City of Hope? How long did it take for you to feel okay again? Are you back to work? I really like my job and that's my biggest concern - I'd like to be able to get back to work and I think I have until mid-October before I will more or less be forced to retire. Not sure if that's a realistic expectation. My PA said I should not aspire to that and should apply for SSD - not really what I want to do. She's kind of a downer. I still need to talk to the doctor and the social worker about it.
My first encounters with my doctor over this was at Kaiser Fontana. Those experiences were beyond awful. I was really happy to transfer to Anaheim and feel like I am getting much better care . I was hospitalized at Kaiser Irvine and they were very good.
I was completely stunned to receive this diagnosis and my world has been turned upside down for 2013. Good news is, I'm feeling a lot better and hopeful for the future thanks to all of the encouraging information that has been received on this and other web-sites.
How long did you stay at City of Hope? How long did it take for you to feel okay again? Are you back to work? I really like my job and that's my biggest concern - I'd like to be able to get back to work and I think I have until mid-October before I will more or less be forced to retire. Not sure if that's a realistic expectation. My PA said I should not aspire to that and should apply for SSD - not really what I want to do. She's kind of a downer. I still need to talk to the doctor and the social worker about it.
My first encounters with my doctor over this was at Kaiser Fontana. Those experiences were beyond awful. I was really happy to transfer to Anaheim and feel like I am getting much better care . I was hospitalized at Kaiser Irvine and they were very good.
I was completely stunned to receive this diagnosis and my world has been turned upside down for 2013. Good news is, I'm feeling a lot better and hopeful for the future thanks to all of the encouraging information that has been received on this and other web-sites.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Diagnosed Stage IV February 2013
I was in City of Hope for nearly three weeks for my SCT. This was a bit longer than most people stay. What kept me there longer was I was having difficulty getting myself to eat food and they were keeping me so they could feed me intravenously.
I was diagnosed on April 1st 2011 and started treatment on Velcade and dexamethasone. The peripheral neuropathy I developed from Velcade was more severe than most people get. I stopped the Velcade and dexamethasone in July after I developed a orthostatic blood pressure condition causing me to black out when I stood up and made even standing very difficult. I also lost my sense of taste and appetite. However Velcade was very effective on my myeloma and was in a state of very good partial remission at the time I stopped it, not a bad result.
I am 6’1” and from July to October before I had my SCT I went from about 205lbs to 160lbs. I was prescribed dronabinol (Marinol, tetrahydrocannabinol) to try and help my appetite but it did not seem to do much. I had also become dependent on the opiate pain killers I was taking for the peripheral neuropathy. Things were looking no so good at this time and I was just hoping to stay healthy enough to be able to do the SCT. I was working part time though much of this but the stopped the last few weeks before the SCT. The fatigue was simply getting to be too much.
The SCT went pretty well over all. I lost another 5lbs getting down to 155lbs by the time I left City of Hope. Fortunately I was able to stop the opiate drugs I no longer need as the peripheral neuropathy had subside quite a bit since I stopped the Velcade 4 months earlier. I think the anti-nausea medications I was taking to help with the sickness from Melphalan also helped me with opiate withdraw.
When I got out of City of Hope, walking to the end of my block and back a few times a day for exercise was about all I could do. I kept the house above 80 degrees or else I would start shivering. But by February I did a 25 mile group cycle ride in Palm Springs. Skied in March, and in July hiked to Nevada Falls in Yosemite.
Recovery happened surprisingly fast, I thought it was going to take a lot longer than it did. Today I am in complete remission, working full time, swimming three times a week, and did my first 100 mile bicycle ride last month. I still have some mild peripheral neuropathy stinging in the feet that will likely never go away but I easily live with that.
I was looking at the SSD and early disability retirement from work options as well. Fortunately my treatment went well and I do not have severe skeletal damage or pain so I did not have to pursue those options for now, someday I may have to though.
I was diagnosed on April 1st 2011 and started treatment on Velcade and dexamethasone. The peripheral neuropathy I developed from Velcade was more severe than most people get. I stopped the Velcade and dexamethasone in July after I developed a orthostatic blood pressure condition causing me to black out when I stood up and made even standing very difficult. I also lost my sense of taste and appetite. However Velcade was very effective on my myeloma and was in a state of very good partial remission at the time I stopped it, not a bad result.
I am 6’1” and from July to October before I had my SCT I went from about 205lbs to 160lbs. I was prescribed dronabinol (Marinol, tetrahydrocannabinol) to try and help my appetite but it did not seem to do much. I had also become dependent on the opiate pain killers I was taking for the peripheral neuropathy. Things were looking no so good at this time and I was just hoping to stay healthy enough to be able to do the SCT. I was working part time though much of this but the stopped the last few weeks before the SCT. The fatigue was simply getting to be too much.
The SCT went pretty well over all. I lost another 5lbs getting down to 155lbs by the time I left City of Hope. Fortunately I was able to stop the opiate drugs I no longer need as the peripheral neuropathy had subside quite a bit since I stopped the Velcade 4 months earlier. I think the anti-nausea medications I was taking to help with the sickness from Melphalan also helped me with opiate withdraw.
When I got out of City of Hope, walking to the end of my block and back a few times a day for exercise was about all I could do. I kept the house above 80 degrees or else I would start shivering. But by February I did a 25 mile group cycle ride in Palm Springs. Skied in March, and in July hiked to Nevada Falls in Yosemite.
Recovery happened surprisingly fast, I thought it was going to take a lot longer than it did. Today I am in complete remission, working full time, swimming three times a week, and did my first 100 mile bicycle ride last month. I still have some mild peripheral neuropathy stinging in the feet that will likely never go away but I easily live with that.
I was looking at the SSD and early disability retirement from work options as well. Fortunately my treatment went well and I do not have severe skeletal damage or pain so I did not have to pursue those options for now, someday I may have to though.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Diagnosed Stage IV February 2013
I can't even imagine receiving a diagnosis of cancer from a Physician Assistant. I would have found another doctor that day. I have nothing against PAs or ARNPs for routine visits, but you should always have access to see the doctor (he's billing the insurance for seeing you).
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soco
Re: Diagnosed Stage IV February 2013
Hi Carol, Thanks for sharing your story here! It surprises me that you would have been told you were 'Stage 4', and I think you shouldn't dwell on that and just carry on with your treatments. Lots of us patients have not been in good shape when dx'd, and yet managed to overcome that and reach a healthier state again. Since you were otherwise in good health, hopefully you can recover from this.
It's nice that Eric H. and you are being treated at the same hospital! Best wishes to you!
It's nice that Eric H. and you are being treated at the same hospital! Best wishes to you!
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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
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