[Loriwils]

Lori, diagnosed with multiple myeloma in May 2017

by Loriwils on Mon Jan 22, 2018 1:30 pm

Hi,

I have been using this great forum for many months now and finally decided to introduce myself.

Prior to my diagnosis, I had been having digestive issues that just wouldn't go away. I went to my doctor, who ordered many tests (colonoscopy, endoscopy, X-rays of abdominal area, gallbladder test, etc). The results of all tests showed everything normal. Then bloodwork was ordered which showed things abnormal (creatinine, anemia, calcium). Thankfully my physician kept pursuing the cause and it was confirmed I had multiple myeloma.

I felt completely fine. No lesions, broken bones, etc. I was put on Revlimid, Velcade, and dexamethasone (RVD) for six cycles and went into a stringent complete remission (sCR). Oh, I did have a terrible case of double pneumonia and was hospitalized for six days, so my treatment was interrupted for a few weeks. Now I'm trying to avoid germs at all cost!

In October I went through the stem cell harvesting process and harvested enough stem cells for two transplants. I decided to pass on the transplant since my response was so good. I was also concerned about melphalan and secondary cancers. I know the risk is fairly low, but I am also a breast cancer survivor and felt strongly about doing all I can to avoid a third cancer!

So now I am on Revlimid maintenance, 10 mg daily. I was surprised that my oncologist said it is my choice whether to take it or not. These decisions aren't easy, but I'll stick with it for awhile because of its potential benefits.

So now my goal is to live my life (with Gods help) and try not to focus on "what ifs". I hope and pray daily that more and more new drugs become approved and that we can even celebrate a multiple myeloma cure someday in the not too distant future.

Thoughts and many blessings to all of you!
Lori

[willow75]

Re: Lori, diagnosed with multiple myeloma in May 2017

by willow75 on Mon Jan 22, 2018 4:35 pm

Hi Lori,

I'm so glad you had a great response to RVD! I'm several months behind you on this journey and that's really reassuring to hear. I completely understand being wary about additional cancers if you've been through breast cancer as well.

-W

[Loriwils]

Re: Lori, diagnosed with multiple myeloma in May 2017

by Loriwils on Mon Jan 22, 2018 8:29 pm

Hi Willow!

Thanks for responding! I hope you also have a great response to the treatment you're receiving. Please keep us posted.

Lori

[Nancy Shamanna]

Re: Lori, diagnosed with multiple myeloma in May 2017

by Nancy Shamanna on Tue Jan 23, 2018 11:31 am

Welcome to the forum, Lori! I also hope that you do really well with your treatments.

The topic of secondary (or tertiary) cancers is something that concerns me also. There is a Beacon article concerning cancers occurring in patients who took Revlimid and melphalan:

"Revlimid And Secondary Cancers: Melphalan May Be The Culprit," The Myeloma Beacon, March 7, 2014

Since I have taken melphalan for a stem cell transplant and also Revlimid for three years, although not at the same time as the melphalan, I am now leary of taking Revlimid again! And also leary of having a second stem cell transplant.

I also have had the two cancers you have had, but in reverse order. Breast cancer is quite common in women, about a 10% chance in one's lifetime I think, so I can't blame getting that on Revlimid really. Because I am taking maintenance therapy (anastrozole) for the breast cancer, I am hoping not to have a recurrence of that.

[Loriwils]

Re: Lori, diagnosed with multiple myeloma in May 2017

by Loriwils on Tue Jan 23, 2018 1:20 pm

Hi Nancy!

I have followed your posts quite often before I joined the forum. You have a wonderful way of expressing yourself and your posts always seem to be of some benefit to me.

I am also taking anastrozole (Arimidex) as maintenance for breast cancer. I agree, breast cancer is very common. I was diagnosed with it in 2010. Then in 2017 I was diagnosed with multiple myeloma. Makes me wonder if the strong chemo I received in 2011 for breast cancer was a factor in my myeloma diagnosis. That is one of the reasons I am so fearful of secondary cancers as you are too.

I understand your concern about Revlimid. I've only been on it for two months but wonder every day if I should be taking it or not. My doctor left the decision completely up to me! They told me that it is kind of a guessing game. I've also been having gastrointestinal issues due to Revlimid but trying hard to manage it every day.

Thank you again for your contributions to this forum. You comments are very much valued!

Lori

[Nancy Shamanna]

Re: Lori, diagnosed with multiple myeloma in May 2017

by Nancy Shamanna on Tue Jan 23, 2018 1:43 pm

Thanks Lori, your comments reminded me of seeing patients who had obviously taken strong chemotherapy for their cancer, when I was taking radiation treatments. They were wearing turbans and wigs, having lost their hair. I didn't take that in my treatment, but have been down that road before after my stem cell transplant! I don't know what the strong chemo would have been that you took, but just keep on with the best advice you can get and hopefully you won't have more recurrences of any cancer.