[angcomfort]

Roller coaster ride

by angcomfort on Sat Jan 18, 2014 1:42 am

Hi everyone,

I was just diagnosed with multiple myeloma. I am in the staging phase at the moment.

I am a very active 39 year old mother of 2 boys. I have been a massage therapist for over 19 years at one of the top spas in the country . I was an avid mountain biker as well.

I had lumbar fusion surgery 11 years ago and have always just lived with back pain to a degree.

A few months ago I started having rib cage pain. I figured it was from my work. I finally went to a doctor and had a rib x ray that was normal. So I continued to work believing it would go away.

It never did. I went to another doctor who ordered another X ray that was negative for fracture. She decided to order a chest CT to be on the safe side. This was all the happening the week before Christmas. The holiday time at work is one of our busiest times at work and I am the main income source for our family. My husband works out of the home and has been Mr. Mom for years and I am very fortunate to have him. (sorry for the rant)

My doctor insisted that I leave work and come see her ASAP.

I was told that my ribs looked great but my thoracic spine had numerous lytic lesions (too many to count).

I was then sent for an MRI of spine, transvaginal ultrasound, and diagnostic mammogram to rule out any cancers that had spread.

I was then sent to a hematologist. He wanted to rule out ovarian and breast cancer before we started testing for myeloma. This day was December 23, 2013. His office was going to be closed for the next 2 weeks. As well as most other doctor's offices.

Needless to say it was a LONG Christmas holiday. I tried to hide my fear and remain happy for my children. They still don't know what is going on now. They think that I hurt my back.

After the New Year, I received my reports . The MRI of the spine showed one spot that looked suspicious for neoplasm. My oncologist ordered a CT guided bone biopsy. He was very optimistic and really thought it would turn out to just a benign hemangioma. I went back to the doctor a few days later and it showed a plasmacytoma. He was worried that I was beyond that because my calcium was elevated and I am also anemic. He then ordered a PET scan. I just found out the I have tiny lesions everywhere. Skull, ribs, back, arms, hips, legs, etc. He still does not have my Bence Jones markers yet and my bone marrow biopsy results have not come back yet. He stated that it was showing a 9% level at this point. I am scheduled to start chemo next week. But he is sending me to the Mayo Clinic first. He really has not explained much about this, I will be starting Velcade, Relimid, and dexamethasone.
I had to have a IV and Zometa earlier this week.

They told me I would be a little achey ... but I had a fever of 104 that night and could literally not move. Is that normal?

Will this other combination make me feel that bad?

I know it is light chemo for now, but I still have not told my children.

Any insight would be greatly appreciated.

[Multibilly]

Re: Roller coaster ride

by Multibilly on Sat Jan 18, 2014 8:38 am

Angela,

You are so young! I feel for you having this disease at such a young age.

The multiple myeloma team at the Mayo is quite excellent and it also sounds like your oncologist is doing all the right things. Regarding Zometa, your reaction sounds normal and it's great that you have started on that drug given your situation. See this recent post:

https://myelomabeacon.org/forum/zometa-side-effects-t2725.html?hilit=zometa

There is a lot of solid promise for you leading a normal life as you move forward with treatment. The latest drug treatments for multiple myeloma have significantly helped many achieve a normal and pain-free life.

[gardengirl]

Re: Roller coaster ride

by gardengirl on Sat Jan 18, 2014 6:34 pm

Hi Angela! I just joined as well. I'm sorry I cannot comment on the medications, but as a mom, please believe me when I say I know EXACTLY how you feel. I got my diagnosis the day before Thanksgiving. My family went away for the weekend and it was so difficult to hide my emotions from the kids. I excused myself many times to have a breakdown. I have decided not to tell them until I absolutely have to since they are young (I have 11-yr-old twins). But I think if they were older, I would probably tell them as I would need their support (and understanding why their laundry isn't done!). Do what feels right in your heart. The more I read about myeloma, the more I feel we ALL have a promising future...and you WILL have many, many more Christmas's to enjoy!

[LibbyC]

Re: Roller coaster ride

by LibbyC on Sat Jan 18, 2014 7:38 pm

Hi Gardengirl and Angcomfort,
When I was diagnosed my children were 6 & 10 now they are 11 and 15. I told them pretty soon after my diagnosis - it was a bit hard not to. I saw my GP on a Tuesday, the oncologist the day after, I was in hospital that afternoon (and stayed there for ~8 days) and started an older style myeloma treatment on the Friday. I lost my hair 17 days after that. So having a bald head is kind of a give away.

If I were a newly diagnosed patient (hindsight is a wonderful thing) I would want to know my cytogenetics (what is my myeloma risk) are, what is the percentage of plasma cell involvement and what my M- spike is. Depending on the treatment regimen for the cytogenetic risk would determine how soon I told my children. I didn't know my cytogenetics but I don't think my treatment regimen would have changed if it had been known.

All the best,
Libby

[angcomfort]

Re: Roller coaster ride

by angcomfort on Sat Feb 01, 2014 4:33 pm

Thank you to all that have replied,

I did end up telling my children what was going on. My oldest knows the whole truth; my 9 year old thinks that I have a bone disease and that I need lots of medicine to keep my bones from breaking. I will take it one day at a time with him. I don't want my 9 year old to worry anymore than he has to.

I ended up having to go to the hospital in Atlanta at Emory (5 hours away) . The doctors were worried about tumor lysis syndrome.

I am trying to wrap my head around this whole thing. I was biking 20 miles a day, giving 5-7 massages a day , and still having enough energy for my husband and children. I find it hard to make it up the stairs now!

My health has rapidly declined the last 3 weeks. I am trying to figure out what M-spike means. I know that my free light lambda chain came back at about 6000. The PET scan showed small lytic lesions on almost every bone in my body. My plasma marker came back at 90%. I have been told that I am stage 3 but not to worry about the staging.

I have started Velcade and dexamethasone and besides the weakness and extreme bone pain I seem to be doing well. I am not able to work at the moment. I am hopeful that I am a stem cell candidate. I try and laugh alot!!!!! I am thankful that I found this site and hopeful for the future.

[Christa's Mom]

Re: Roller coaster ride

by Christa's Mom on Tue Feb 04, 2014 2:02 pm

Hi angcomfort,

I'm so sorry you are going through this. Honestly, the time it takes to get the diagnosis and then starting treatment is one of the worst times with this disease. The good news is that for most people, once treatment starts some of their symptoms resolve and they start to feel better. Hopefully this will be true for you.

The first time EJ had zometa he had a high fever and spent a miserable weekend in bed sleeping. From what I remember, that is one of the side affects with zometa. Thankfully, it usually only happens the first time you get it.

Staging is not as important in myeloma as it is in other cancers. More important are the results of the FISH test, which will tell you if your myeloma has any high-risk genetic characteristics.

Good luck! I hope that helps.

Lyn