[Cgirl58]

Chasing that hope with every treatment and visit

by Cgirl58 on Tue Dec 27, 2016 10:15 am

Hi, I am Cynthia.

I found this site last year with all the hopes and dreams that we all have for a complete remission and more time to live our lives.

My myeloma was discovered on my birthday in October of 2015. I always have my physicals on my birthday so I would never forget my yearly physical. I just so happened to have changed my primary care physician that year after my boss had told me how great her new physician was about addressing women's issues. I arrived for my appointment and was taken to the back.

My new PCP's nurse gave me a cup for my urine sample, instructed me on how, showed me the rest room, I went in, got the sample, handed it to her, and she took me to my room. She instructed me on putting on my gown, said she was taking the urine for the test, and she would be right back and draw blood samples. So I waited and waited.

To my surprise, my new doctor came in and introduced herself and told me my urine samples did not look good and she was sending it off for further testing. Bad news.

Off to a urologist. Then to an oncologist.

That testing lead to more testing. Tons of bloodwork. X-rays, CT, PET, bone marrow biopsy.

RESULTS; Stage II and some of Stage III multiple myeloma. The same cancer my maternal grandmother had passed away from. As did her sister, and one of their aunts. Also my mother passed away in July of 2015, 3 months before me finding out I had it, and I believe she had it also but refused test.

Started Velcade, Revlimid, and dexamethasone triplet treatment regimen. January to end of March 2016. When I first started induction, my numbers dropped remarkably. But it was just that. The big drop and nothing more. Then at the end of March came the CREEPER, as I call my myeloma. It was creeping back.

Off to the stem cell transplant team. The harvest, as I call the collection during apheresis. 12 million the first one! A record. Did not even need the second collection, but had to do it because of the Neupogen injection that evening. 6 million that time. I only weigh 98 lbs. So that was crazy I thought.

High dose chemo – melphalan. The transplant. The month in the hospital . The isolation. then the testing after the transplant. Praying for a complete remission (CR) like all of my many friends I have met and gotten to know. They all got a complete remission. Why not me?

THE BIG DISAPPOINTMENT. My numbers barely moved down just a tiny bit. All that for nothing.

They said that my cancer should stay stable and even drop more. I said great! But then again I saw it go right back to where it was right before I had the stem cell transplant. I said to myself let it stay there. They started Revlimid maintenance. My number were CREEPING again. I asked the doctor if it is creeping is the Revlimid doing anything, I might as well not even be taking it. He said lets see what goes on another month.

THE BIG CREEPER IS BACK. Apparently my cancer is a not as regular as they thought for some reason.

Now on Friday I start Darzalex, Revlimid, and dexamethasone.

Here is the irony.

I apparently had it for years and not one of my doctors had tested my blood protein that has been creeping up higher since 2003.

I have had osteopenia since 2009. my little finger was broken on my right hand, only a slight incident in 2012. 2014 after surgery I got sepsis and almost died 5 times. You think someone would have looked at my bloodwork that showed so many signs of this disease

[Colin]

Re: Chasing that hope with every treatment and visit

by Colin on Wed Dec 28, 2016 11:08 am

Keep your chin up Cynthia. I think the one thing we must all strive for is to try and maintain positive about the outcome. I was only recently diagnosed and have yet to complete my journey through this initial treatment and on to a stem cell transplant in April. Like you I am looking forward to success in remission.

I too have wondered about why this wasn't detected earlier. A year and half ago I went into emergency for a pain in my ribs and was subjected to a battery of tests and was told I was fit as a fiddle. This year a completely different story. I suspect when someone spots lytic lesions in an xray and then embarks on a suspicion of multiple myeloma, they get to the bottom of it pretty quickly. Blood work taken without clear direction may not find such matters. In fact, I believe the real key was the 24 hour urine collection and electrophoresis. Anyway, the past is the past, and I am now firmly focused on the present.

I hope things get brighter for you soon in 2017. All the best.

Colin.

[Joseph Benante]

Re: Chasing that hope with every treatment and visit

by Joseph Benante on Thu Dec 29, 2016 11:03 pm

I have lived in Parker, Colorado for the past 10 years. We came here to be close to our grand­children.

As it was with you, I changed PCP, with two blood tests, a referral to a local oncology group, and multiple further tests, they confirmed multiple myeloma stage 2. I was exposed to toxic chemicals 23 years ago and no doctor caught it with my yearly visits.

I'm on cyclophosphamide, Velcade, and dexamethasone (CyBorD) treatment and a clinical trial where daratumumab is applied upfront as compared to the back end when other treatments do not perform. I feel very fortunate to be one of the first on this trial. There is a great deal of hope for us, using immunotherapy technology, daratumumab targets the CD38 directly, killing cells.

I also have chromosomal abnormalities, but not those that place me in a high risk state.

In addition to my meds, I pray multiple times a day. That gives peace and reduces stress. Stress is negative energy and we need all the positive, I've changed my died for about 80%, staying away from salt, sugar, coffee, alcohol and foods containing preservatives, and drink about 80 oz (2.4 l) of water a day and take Ensure. I find it easy to take as compared to pills.

In addition. I lift weighs, walk ,and hit a heavy punching bag with "M­M" labeled on it. We must strive to keep our bodies and mind in the best shape we can.

Please don't sit in the corner with the "wo is me". Get out and go for it.

I'm 79 and in exceptional condition, even with multiple myeloma, my strength and energy and positive attitude.

I hope this message gives you hope and some new ways to attack our multiple myeloma. I promised my wife that I'll beat it and she is holding me too it. I thank God for my dedicated wife and said to her,"There is no man on this earth could love you more".

We must all pull together and give each other hope. May God Bless all of you in the coming year.

[Cgirl58]

Re: Chasing that hope with every treatment and visit

by Cgirl58 on Sat Jan 07, 2017 7:29 am

Hello Colin,

Thank you so much for your reply. I would have replied sooner but have been undergoing my new treatment regimen. Had a bad reaction the first round and have been on the usual dex up and down. Hanging in there, as I tell everyone who asks how I am.

Also, I do not live on my computer or phone as the newer generations do now. I get on only occasionally.

I read your intro story and must say you are a lot like me. I was a chef before I had to go on disability in November last year,

I was in ballet, a runner, and just in great physical condition. The last few years I have had a lot of pain but blew it off to just getting older. I have a very high pain threshold. Doctors were always amazed by that when I would march into the emergency room. LOL

I am a very positive person and continue to go about doing as much as I can everyday. I still eat right and stay active as I can. I have to take pain medications for the neuropathy I have gotten from treatment. Tons of damage there. I had neuropathy before that too because of the sepsis and damage done to my body from it and those medications and had 50 pounds.of fluids pumped in me to keep my blood pressure up to keep me alive. My legs took the brunt of that.

I am very positive about my new treatment now. Had it yesterday and am doing much better this time.so far. YEAH! I am staying positive about Darzalex (daratumumab), and what I have read on all the research and recent news from all the reports, clinical trials, etc. it is the drug that may change our lives.

I put my picture on my profile now. That smile is me all the time. Have the smile wrinkles to prove it and wouldn't have it any other way. No plastic surgery or botox here. LOL.

Stay positive. Accept the facts, do what you can to love the life you have left and love those all around you. I hug complete strangers for their compassion. Cry, not for myself, but for all of those who love me and are part of my life. This is harder on them than me.

I have had a great life. Sure everyone has bad times. But all thing make you stronger. I AM STRONG!!

I have had all the material things I ever wanted. There is nothing I want more than life. I have always loved life more than anyone I know.

Thank you again for writing me Colin.

Cynthia (Cgirl58)

[JimNY]

Re: Chasing that hope with every treatment and visit

by JimNY on Sat Jan 07, 2017 9:33 am

Welcome to the forum, Cynthia, and good luck on the Darzalex, Revlimid, and dex regimen. I hope it works well for you, giving you a REALLY long remission.

[mikeb]

Re: Chasing that hope with every treatment and visit

by mikeb on Sat Jan 07, 2017 3:02 pm

Hi Cynthia,

Just want to wish you well in your new treatment regimen.

I loved your most recent post about the importance of staying positive. I think that makes a huge difference.

I'm not much of a chef, nor a ballerina!

But I do have a couple of things in common with you. For one, I am a long-time runner. And I think that has helped me in my multiple myeloma journey.

And, like you, I had sepsis (during my stem cell transplant in 2013). I gained 34 pounds during my three-day ICU stay. I thought 34 pounds was a record, but you beat that with your 50 pounds. I looked and felt like an elephant when I got out of the ICU. But I was still alive!

I'm glad your most recent Darzalex treatment went well.

Best wishes to you. Keep that positive attitude, and please keep us posted on how things go for you.

Mike

[Colin]

Re: Chasing that hope with every treatment and visit

by Colin on Sat Jan 07, 2017 9:02 pm

Hi Cynthia.

Glad to read your positive message. I got some good news on my first blood work following my first cycle. I know it is early, but it feels great to start off with positive news.

Thanks for the encouragement.

[Hosanna]

Re: Chasing that hope with every treatment and visit

by Hosanna on Mon Jan 09, 2017 9:07 am

Hi Cynthia,

Your post warmed my heart with you positive attitude and huge smile. Thank you for sharing.

I am on the caregiver side of multiple myeloma. In fact, I just was worried about my husband leaving for work – not feeling great, but refusing to "not go." He was just diagnosed 2 months ago.

From what I have read in this forum, this will be a hard and long road, with little reprieve along the way. So thanks for the smile.

[MrPotatohead]

Re: Chasing that hope with every treatment and visit

by MrPotatohead on Tue Jan 10, 2017 8:45 am

Hello Cynthia,

My experience has been very similar to yours, except that I haven't yet had a stem cell transplant.

I too have "the Creeper". I've tried multiple drugs, and I almost always see an immediate drop in my light chains, and then they start creeping up again. Why? No one can tell me.

And, like you, I have been told that I must have had it for years. I know I've had symptoms for years, and yet, despite regular annual checkups and my complaints about fatigue and pain, no one caught it. That part of the story is quite common. It is a relatively rare cancer and diagnosis frequently comes late, after it has already worked a lot of mischief on you.

The good news is that progress in developing new and effective treatments is proceeding at a remarkable pace. The treatment you are now on --- based on Darzalex -- is cutting edge. In fact I recently read that progress against multiple myeloma has moved forward much more rapidly recently than for any other blood cancer.

Another bit of good news is your wonderful positive attitude. That is really an asset, and will serve you very well.

And finally, you have come to a wonderful place for sharing information and getting support. The Internet can be a mixed bag for that kind of thing, but this forum and web site are truly helpful in so many ways. You will find the latest information and kind, caring participants here who are fighting the same battle as you are. Welcome!

I want to wish you all good things for 2017. May it be the year you vanquish the Creeper!

[Nancy Shamanna]

Re: Chasing that hope with every treatment and visit

by Nancy Shamanna on Tue Jan 10, 2017 9:21 am

I hope that the new drug regimen puts the myeloma down again and that you can get into a remission from that, Cynthia! Stay strong and am wishing you all the best.

I think that one of the problems with getting a myeloma diagnosis (and mine was late too, in Stage 3) is that it is a rare cancer and little known in the general public. The younger doctors are learning about it in medical school now, or at least that is true here. .