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My multiple myeloma journey to date
Ok, here is my story. In the last 5 years I have had both shingles and sinusitis, both infections seen at higher incidence in people with multiple myeloma. The sinusitis I probably had been living with for over a year and did not recognize what it was. Having a constantly runny nose for over a year was what I thought was normal. My girlfriend felt otherwise and pushed me to see a doctor about it, she was right. I had a successful sinusitis surgery in late February 2011 that cured the condition and my trash cans were no longer filled with Kleenex. After the surgery I started having back and rib pain but attributed it to side effects from the Prednisone that was prescribed post-surgery. I went off the Prednisone and the back pain did not go away, I developed rib pain as well. I took lots of ibuprofen which did not help. I scheduled an appointment with my doctor to see what could be done. Before the appointment I was browsing on the Kaiser web site just out of curiosity and saw that I could look at my lab test results from my surgery the prior month. I looked at my CBC and saw I was anemic and made a mental note to bring this up my doctor. At my appointment my doctor examined me and went through usual back pain diagnosis. I mentioned the CBC and he casually said let’s have a look on the computer. He stared at his monitor for a while and his demeanor changed and his attention immediately focused on my blood results. He was a little upset his was not notified of the abnormal results. He scheduled me an appointment with a Hematology just a few days later and ordered a bunch of lab work. I was telling myself I probably just have a vitamin or mineral deficiency but in the back of my mind I knew my diet was good. Over the weekend I was able to review my lab test results on the internet and I saw all the tests done for vitamin and diet related issues were fine. The other tests were for things I never heard of but an internet search revealed they were cancer related and the results were not normal. I self-diagnosed myself as having some kind of blood cancer but I was not sure what kind. It was a this cannot be happening to me moment. A few days later I was in the Hematologist office and I quickly realized it was Hematology-Oncology from all the cancer literature and posters on the wall. The doctor came in, I told my story, and he looked at my lab results and was quite for a minute. His first words were we need to do a bone marrow biopsy and my worst fears were confirmed. Two days later I was back in his office for the biopsy which was difficult because of the back pain. He had to tap me twice as was having difficulty getting a good marrow draw. A follow up appointment was made for two weeks later to discuss the result but I did not make it that long. I started having extreme thirst and was drinking a lot of water. I emailed my Oncologist and he told me to go to the ER immediately and confirmed to me that I had multiple myeloma without waiting for the biopsy results. I went into the ER the next morning was admitted for renal kidney failure from high blood calcium levels caused by multiple myeloma. In the next week the doctors worked hard and saved my kidneys from permanent damage. I meet with my Oncologist when my lab results came back and I had stage 3 IGg multiple myeloma with about 30% cancerous bone marrow. I started Velcade Dextramethasone treatment while in the hospital and continued this until July when I had developed significant peripheral neuropathy (PN) that result in hospitalization for orthostatic blood pressure. This was causing me to pass out when I was standing up. I was also on Morphine for the PN pain. Testing also showed the Dextramethasone was suppressing my Cortisol levels, a hormone that helps regulate blood pressure. The combination of PN and low Cortisol was causing me to black out, which is atypical for most people with multiple myeloma. I stopped Velcade and dextramethasone and have not taken them since. Also during this time I became dependent on opiates, had severe constipation, and loss of appetite. The good news the Velcade worked really well on me. Lab results showed a barely detectable level of multiple myeloma proteins and there was not enough abnormal plasma cells in my bone marrow biopsy to do genetic analysis for risk factors. I was transplanted at City of Hope in late October and discharged in November. I am 6’ 1” and went from 206 when I was diagnosed to 156 lbs when I left City of Hope, but had kicked my opiate addiction while in City of Hope. Since the I have regained 30lbs, been swimming 3000 yds 3 times a week, did a 25 mile bike ride in February, and started skiing again in March. I am back to work and feeling pretty well. I started Revlimid maintenance therapy in March which has been going well. It has been a long road which I could not have done without the support of my family and girlfriend but it has all been worth it. My multiple myeloma protein level is barely detectable. Last year was really difficult but life is good once again.
Last edited by Eric Hofacket on Wed Apr 18, 2012 11:22 pm, edited 1 time in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: My multiple myeloma journey to date
Thanks for sharing your story, Eric. Sounds like you went through a terrible ordeal but fortunately have emerged on the other side of it with renewed health. I can relate to parts of your history too! Hope all continues to go well and that you can keep up with your athletic lifestyle! Swimming is good in many ways, isn't it, since it does not put too much stress on the joints, ditto for cycling.
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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: My multiple myeloma journey to date
Eric
Thanks for sharing. I am glad you are doing so well. When you were talking about seeing your Oncologist for the first time I had Flashbacks. I remember mine looking at me and asking me if I knew exactly why I was there. That was in Dec 2011. I am lucky to only have the Dx. of Smoldering Myeloma.
Good Luck and God Bless
Art
Thanks for sharing. I am glad you are doing so well. When you were talking about seeing your Oncologist for the first time I had Flashbacks. I remember mine looking at me and asking me if I knew exactly why I was there. That was in Dec 2011. I am lucky to only have the Dx. of Smoldering Myeloma.
Good Luck and God Bless
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: My multiple myeloma journey to date
Nancy Shamanna wrote:
> Thanks for sharing your story, Eric. Sounds like you went through a
> terrible ordeal but fortunately have emerged on the other side of it with
> renewed health. I can relate to parts of your history too! Hope all
> continues to go well and that you can keep up with your athletic lifestyle!
> Swimming is good in many ways, isn't it, since it does not put too much
> stress on the joints, ditto for cycling.
The skiing may not be the smartest thing to do but my whole body skeletal survey results were really good. Some lessions on the skul and thinning of some of the vertabrae, but no fractures. Luckly for me bone issues have not be a problem I have been on regular Aredia since being diagnosed in April last year. Skiing is taking a risk but I being conservative on the slopes.
> Thanks for sharing your story, Eric. Sounds like you went through a
> terrible ordeal but fortunately have emerged on the other side of it with
> renewed health. I can relate to parts of your history too! Hope all
> continues to go well and that you can keep up with your athletic lifestyle!
> Swimming is good in many ways, isn't it, since it does not put too much
> stress on the joints, ditto for cycling.
The skiing may not be the smartest thing to do but my whole body skeletal survey results were really good. Some lessions on the skul and thinning of some of the vertabrae, but no fractures. Luckly for me bone issues have not be a problem I have been on regular Aredia since being diagnosed in April last year. Skiing is taking a risk but I being conservative on the slopes.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: My multiple myeloma journey to date
Hi Eric, After the broken vertebrae and subsequent awful pain, I have not gotten back to anything like skiing or jogging...maybe I will try cross country or snow shoeing next winter . Love the winter for those activities, but don't' want to be falling into snowbanks all the time like I used to do! One just can't know how fragile one's bones are...x-RAYS showing lots of lesions can be a little scary.
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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: My multiple myeloma journey to date
Well to put things on a positive note for you, I attend the MMRF Symposium at UCSF last month and one of the doctors said something interesting about his experience with multiple myeloma bone damage. This was completely antidotal and not from a clinical trial or any type of formal research. In his experience, his patients that had severe bone damage at diagnosis tend to have multiple myeloma that was not as aggressive and responded better to treatment than his patients who showed little bone damage at diagnosis. His theory for this was the patients who had more bone damage had less aggressive multiple myeloma that did it’s damage to the bones over a longer period of time unnoticed before the patient finally came in to see their doctor about their symptoms. Those patients who had little bone damage may have only recently developed multiple myeloma, and it is spreading aggressively in a short period of time and will be more difficult to treat but it has not had much time to do significant bone damage. I felt pretty good about not having much bone damage until I heard that. So far to date though I have responded well to the treatments I have received, not CR but pretty close.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: My multiple myeloma journey to date
I know...I was also told that about my bone damage...it is a consolation, that's for sure. Maybe at my age I will out-live it in other ways!! But I do have to be cautious about lifting, and wouldn't want any more fractures. There are different sorts of myeloma, and i have read that it is really more than a single disease. Amyloidosis is certainly related but a different condition, although the same treatments are tried. I also read a post in the Beacon, by one of the oncologists here, on the topic of 'maintenance chemo' , that stated that people with extensive bone damage would probably be put on the maintenance. That helped me to realize why I was treated so thoroughly.
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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: My multiple myeloma journey to date
Hi Eric!!
You write:
" I felt pretty good about not having much bone damage until I heard that. So far to date though I have responded well to the treatments I have received, not CR but pretty close."
Ditto, about I felt pretty good about not much bone damage until hearing that.
I have responded very well though to carfilzomib treatment and have reached a CR. While exciting, I am now praying for sustained response.
You also wrote on another thread about how painful your pre-harvest therapy was subsequent to the shots for mobilization. And how the morphine you had for your PN did not alleviate that pain.
That post has me so frightened and terrified, because I start those shots tomorrow. Not to make it all about your experience though, yours is not the first personal account that I have read that detailed the excruciating pain that resulted after taking G-SF for harvesting. One individual described it as a 6inch shank in his back, an elephant siting on his chest and the jaws of life squeezing his legs. So yours was not the first painful account I was aware of. Just the most recent.
I am praying constantly for God's strength to endure this procedure and for him to substitute his will for mine so that I do well and all those who are part of this apheresis have his guiding hands and knowledge to make this process as least painful as possible.
But bottom line...I am very scared.
and will be requesting narcotics to manage the 'discomfort' (which is how the medical staff describes it.)
Thank God for forums!!
I am happy that all has turned out well for you Eric. You sound like a real trooper.
Hopefully, I too, will have a short term struggle with a great outcome at the end of the tunnel.
You write:
" I felt pretty good about not having much bone damage until I heard that. So far to date though I have responded well to the treatments I have received, not CR but pretty close."
Ditto, about I felt pretty good about not much bone damage until hearing that.
I have responded very well though to carfilzomib treatment and have reached a CR. While exciting, I am now praying for sustained response.
You also wrote on another thread about how painful your pre-harvest therapy was subsequent to the shots for mobilization. And how the morphine you had for your PN did not alleviate that pain.
That post has me so frightened and terrified, because I start those shots tomorrow. Not to make it all about your experience though, yours is not the first personal account that I have read that detailed the excruciating pain that resulted after taking G-SF for harvesting. One individual described it as a 6inch shank in his back, an elephant siting on his chest and the jaws of life squeezing his legs. So yours was not the first painful account I was aware of. Just the most recent.
I am praying constantly for God's strength to endure this procedure and for him to substitute his will for mine so that I do well and all those who are part of this apheresis have his guiding hands and knowledge to make this process as least painful as possible.
But bottom line...I am very scared.
and will be requesting narcotics to manage the 'discomfort' (which is how the medical staff describes it.)
Thank God for forums!!
I am happy that all has turned out well for you Eric. You sound like a real trooper.
Hopefully, I too, will have a short term struggle with a great outcome at the end of the tunnel.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: My multiple myeloma journey to date
Hi Suzierose, I am so happy to learn that you have reached a CR...THAT IS AWESOME!!! Good luck on the neupogen shots....i found the pain built up after a few shots but in the greater scheme of pain, it wasn't the worst I have ever experienced, and it was fairly temporary. Good luck to you with this....I just had to stay home at the end, and was very disappointed not to be able to go out to a concert! So that's not too bad. Hope you will get back to us and let us know how everything is going for 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
Re: My multiple myeloma journey to date
suzzierose,
I believe it is unlikely that you will experience the extreme pain that I and some others have experienced while taking Neupogen for stem cell harvesting, but if you get it is pretty bad. Maybe I know now what it is like to have a baby. I only experienced it for one night though. I took the whole arsenal of pain killers, Hydromorphine, Morphine ER, Demerol , Oxycotin, all within 24hrs and they did not seem to help much at all. My pain came on the night before my Hickman catheter implant surgery so I was told not to take any aspirin or ibuprofen. After the surgery I was finally able to take some Ibuprofen after all those pain killers and the pain subsided over the next few hours and was mostly gone the next day. My belief is the pain was from extreme inflammation from the Neupogen that only the Ibuprofen could resolve. Maybe it was just coincidence. If I had to do it all over again, which I will likely not have to do as they got a lot of stem cells out of me that are frozen, I would make sure that while on the Neupogen you have help nearby in case you develop extreme pain. I would not want to be caught alone with it, especially in the dead of the night. I would also check with my doctor about what to do if extreme pain develops and taking Ibuprofen even before any surgical procedures if I was experiencing pain that Ibuprofen is helping with. I was able to endure the pain for the night and the morning, but if it lasted more than that I would have gone to the ER. I am not sure what else the ER could have done, but if they admitted me and knocked me out completely for the weekend until my harvesting started the next week, I would have been fine with that.
I believe it is unlikely that you will experience the extreme pain that I and some others have experienced while taking Neupogen for stem cell harvesting, but if you get it is pretty bad. Maybe I know now what it is like to have a baby. I only experienced it for one night though. I took the whole arsenal of pain killers, Hydromorphine, Morphine ER, Demerol , Oxycotin, all within 24hrs and they did not seem to help much at all. My pain came on the night before my Hickman catheter implant surgery so I was told not to take any aspirin or ibuprofen. After the surgery I was finally able to take some Ibuprofen after all those pain killers and the pain subsided over the next few hours and was mostly gone the next day. My belief is the pain was from extreme inflammation from the Neupogen that only the Ibuprofen could resolve. Maybe it was just coincidence. If I had to do it all over again, which I will likely not have to do as they got a lot of stem cells out of me that are frozen, I would make sure that while on the Neupogen you have help nearby in case you develop extreme pain. I would not want to be caught alone with it, especially in the dead of the night. I would also check with my doctor about what to do if extreme pain develops and taking Ibuprofen even before any surgical procedures if I was experiencing pain that Ibuprofen is helping with. I was able to endure the pain for the night and the morning, but if it lasted more than that I would have gone to the ER. I am not sure what else the ER could have done, but if they admitted me and knocked me out completely for the weekend until my harvesting started the next week, I would have been fine with that.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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