Hi my name is Lindy Pawsey. I'm originally from Australia but now live in Bakersfield California.
My story starts just 12 months ago when the classic symptoms of hip and rib pain presented themselves. Being active, I just thought I had injured myself at the gym, and I don't normally go to the doctor unless I have a laundry list of things to discuss or urgent. But this, combined with losing 20 pounds and being extremely tired over the next month, I finally went to my primary physician, who sent me to get a transfusion because my HGB was only 7. He also sent me to an oncologist.
I really was naive about the whole situation and was in total shock when at the end of November, 2013 multiple myeloma was diagnosed. I was the fit and healthy one of the family. Why me?
I was 51, a white female with 2 teenagers. I didn't have time for this. It still puzzles me today how I got this, as I have never worked with chemicals like so many others, or been in a war.
Anyway I started treatment in December 2013 on a cocktail of Velcade, dex and one other I can't recall, then in March my specialist in LA (Berenson) changed me to a clinical trail of Kyprolis. In March, my LLC were over 6,000 and by July were down to 398 and no protein present in urine. I only had the minor side effects of constipation and insomnia, which I learned how to overcome. I was active walking and swimming 4-5 days a week and generally not letting myeloma rule my life - even thinking about going back to work (hadn't worked for 16 years while following my husband's career over three continents).
Then, low and behold, by September 2014 just when I was kind of expecting CR, the figures did a complete turn around and started to go in the wrong direction. My LLC was up over 1,000. Proteins now present in urine! (On the other hand, I was kind of expecting this, as the back pain had returned. I think I have taken more pain killers – although nothing stronger than a Tylenol – in the past two weeks than I have taken the past year.)
I am now off treatment until I see my specialist on Wednesday and a new course of treatment is decided on. Three different regimens in one year - really worried I will begin to run out of options. What a roller coaster!!!
Forums
Re: My story
Hi Aussiegirl!
I agree with you about the roller coaster ride! I was diagnosed in May 2013 and had a stem cell transplant in October. I've been dealing with relapse since May (but if you count my plasmacytomas, it's been longer than that).
I've also been through many drugs.
I hope a good solution is at hand when you meet with your specialist this week. It's all so very frustrating.
All my best wishes,
Joy
I agree with you about the roller coaster ride! I was diagnosed in May 2013 and had a stem cell transplant in October. I've been dealing with relapse since May (but if you count my plasmacytomas, it's been longer than that).
I've also been through many drugs.
I hope a good solution is at hand when you meet with your specialist this week. It's all so very frustrating.
All my best wishes,
Joy
-
Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: My story
Hi Lindy.
What are LLC? Do you mean lambda free light chains?
I have heard of Velcade, and dex, but I haven't heard of Kyprolis.
It sounds like the Velcade and dex were working, but then they had you quit taking those so you could take the Kyprolis?
I am sorry to hear of your relapse and Joy's too. When I read the forum, one of the hardest parts of multiple myeloma for most people is that it is so unpredictable. Joy described it as a roller coaster - it is hard not to feel frustrated when you don't see results.
Cathy
What are LLC? Do you mean lambda free light chains?
I have heard of Velcade, and dex, but I haven't heard of Kyprolis.
It sounds like the Velcade and dex were working, but then they had you quit taking those so you could take the Kyprolis?
I am sorry to hear of your relapse and Joy's too. When I read the forum, one of the hardest parts of multiple myeloma for most people is that it is so unpredictable. Joy described it as a roller coaster - it is hard not to feel frustrated when you don't see results.
Cathy
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: My story
So I have my new suggested regime elotuzumab / Revlimid / dex , aspirin, and Zometa. Anyone had any experience with this cocktail???
-
aussiegirl
Re: My story
No experience with elotuzumab (I'm only smoldering), but I am excited for you. Is this part of a clinical trial? Elotuzumab is one of the new monoclonal antibodies that seem to hold much promise. Wishing you the best.
-
Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: My story
Hi Aussiegirl,
There was someone else who recently asked if anyone had experience with elotuzumab and, unfortunately, there were no responses to the inquiry. This is not that surprising, since the drug is still in clinical trials and not yet approved for use outside of trials.
There hasn't been a lot of data presented about elotuzumab in the past year or so. There was a study presented in a poster at a meeting in the summer of 2013, however, that might give you some idea of how effective the combination is likely to be and what sort of side effects to expect.
See the "Elotuzumab" section of this Beacon article for more information,
"ASCO 2013 Multiple Myeloma Update – Day Four: Poster Presentations," The Myeloma Beacon, June 6, 2013.
and note that the discussion in the article also includes a link to a PDF of the poster that was presented at the conference.
The combination of elotuzumab, Revlimid, and dex is considered by many myeloma specialists to be quite active against myeloma.
You can find all the Beacon's news and opinion articles related to elotuzumab at the elotuzumab topic (tag) page.
There was someone else who recently asked if anyone had experience with elotuzumab and, unfortunately, there were no responses to the inquiry. This is not that surprising, since the drug is still in clinical trials and not yet approved for use outside of trials.
There hasn't been a lot of data presented about elotuzumab in the past year or so. There was a study presented in a poster at a meeting in the summer of 2013, however, that might give you some idea of how effective the combination is likely to be and what sort of side effects to expect.
See the "Elotuzumab" section of this Beacon article for more information,
"ASCO 2013 Multiple Myeloma Update – Day Four: Poster Presentations," The Myeloma Beacon, June 6, 2013.
and note that the discussion in the article also includes a link to a PDF of the poster that was presented at the conference.
The combination of elotuzumab, Revlimid, and dex is considered by many myeloma specialists to be quite active against myeloma.
You can find all the Beacon's news and opinion articles related to elotuzumab at the elotuzumab topic (tag) page.
Re: My story
I had my third biopsy in 12 months. Hmmm, I wouldn't wish that on anybody. But they are getting better. I don't fret so much in the days leading up to them; 5 minutes of uncomfortableness and a bit of a sting.
Yesterday was my last one, so hopefully I can begin my new treatment on Thursday.
Yesterday was my last one, so hopefully I can begin my new treatment on Thursday.
-
aussiegirl
Re: My story
Hi Aussiegirl.
You have a good attitude!
When I had my 1 year immunizations, I found myself evaluating them to see which hurt the most - ha ha. In the old days I dreaded shots.
You have a good attitude!
When I had my 1 year immunizations, I found myself evaluating them to see which hurt the most - ha ha. In the old days I dreaded shots.
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: My story
Hi, started my new treatment today. Arrived at 9:15 a.m. and left at 5:00 p.m. Tthey took it nice and slow. No side effects or reactions YET.
Also found out results from CT scan. I have an old unhealed fractured rib? Not sure when that happened.
Also found out results from CT scan. I have an old unhealed fractured rib? Not sure when that happened.
-
aussiegirl
16 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories