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Multiple Myeloma Delete 17

Topic: My diagnosis
Updated June 22nd, 2018, filed in Multiple Myeloma
I am not sure of the relevancy of this story but I thought I might try to express some of my experiences over the past year.

In May of 2017 my GP ran some blood tests on me because I was complaining about being tired and my golf game was suffering. At the time I was just thinking it was old age creeping in. I thought she might give me something like testosterone to give me an energy boost.

A few weeks later when I had not heard from her I contacted the office and was told to come in. When I met with the doctor she was quite somber as she explained about monogommapthy of undetermined significance, i.e. MGUS. She gave me a referral to NWMS and said I should contact them for further evaluation. Thus began my new experience of dealing with cancer. For the next three months I was on a roller coaster of emotions as I tried to learn as much as possible about this disease, multiple myeloma. Further testing confirmed the disease and treatment began in late July. At first I stopped doing nearly all activity as the knowledge of knowing my antibodies were compromised scared me. A couple weeks after treatment began we met with a nurse counselor who removed most of my fears and provided some common sense to go along with the notebook of “do’s and don’ts” I had been provided. I got back to playing golf again and opened up the house to the grandchildren. I was fortunate that I have been an active person since my retirement and have decent physical health. This allowed me to be considered for an autologous stem cell transplant. After three months of chemo and a consultation with doctors at Seattle Cancer Care Alliance, I was approved for the procedures to get me ready for the transplant. In mid-November we moved to Seattle and checked into the SCCA House. I immediately began undergoing a number of tests and came under the care of the “Rose Team”. On December 5th my Hickman was installed and that afternoon the Apheresis was performed. I was told that over 8 million stem cells were extracted and sent off to be frozen. A week later, on December 12th I was given the Melphalan to condition me prior to the transplant. I was told the Melphalan would destroy any remaining myeloma cells as well as the stem cells. A few hours later my frozen stem cells were brought and warmed up before they reentered my blood stream. The next week was a battle for my life as I struggled greatly to eat and drink as I was told but eventually my weight loss and continuing diarrhea resulted in me leaving the clinic and being put in the care of the transplant floor at the UW Hospital. I spent Christmas there as well as New Year’s. Over the 9 days I was there I gradually improved and I continued trying to eat food and drink water although I was being fed everything intravenously the entire time. On January 12th I was released from the care of SCCA and allowed to go home and back to the care of NWMS. My weight loss continued although I was eating all the time and drinking plenty of water. My body was just burning up everything. In mid-February I turned the corner and my weight started coming back. This was enough to release me from my isolation and allow me to return to normal activities with caution. A great weight was lifted from me. For those three months I had minimal sleep. All kinds of pain and sleep aids had been tried without success. Primarily this was a result of my neuropathy and cramping in my legs. I walked constantly, around and around first at the SCCA house and later at the apartment at the Pete Gross house. I did the same after returning home. By March I was playing golf with my old cronies again and walking around our neighborhood on days I didn’t play golf. I tried using CBD marijuana with a vape pen to help with my sleep. A couple of good puffs and I was in a good place and sleep came easy. It is nearly July now and I have been on maintenance these past couple of months. I am receiving Velcade again as I did before the transplant, though a smaller dose and less frequent. I am also receiving monthly doses of Gamma Globulin for the antibodies and Zometa for my bones. They continue to monitor my blood regularly and this will go on through the end of the year. I am trying to listen to my body and make good choices. I hope to continue this story.

/////August 18, 2018 Update.////// I am now getting used to my monthly treatments. At first I tried doing too much and in July I ended up in the emergency room. I had tried to keep my Saturday golf date and it was just too much. So now, for about 3-4 days after treatment I am just taking it easy and listening to my body.

My innoculations have been scheduled for early December as has my annual visit to SCCA. I have been told that I will have a weeks worth of testing and education while in Seattle. We plan on commuting to avoid the expense of staying there.
I'm Tom, and I'm a survivor of Stage 2 Multiple Myeloma

I am currently going thru this. on 9/14/2018 I will be going to the CINJ/RWJH to harvest my stem cells.
Your comments gave encouragement and hope.
I know the road ahead of me will not be an easy one, but I am optimistic and have faith.
Hope you continue to a healthy recovery and stay strong.

  • Thu Aug 30, 2018
Hi, I'm Pamela1101

Jan 2, 2018, I too went to Seattle for my SCT and also stayed at the SCCA house. I was also on the Rose team. God bless them and my Doctors .. mainly Dr Holmberg who I loved. The transplant was difficult. The sickest I have ever been in my life but worth it. Collecting my cells took 4 days. They were just hard to harvest in my case but they got enough for my SCT. I am in remission now and hoping for a long life. My maintenance is 5m Revlimid as I could not tolerate 10m. So far so good. I also used one drop of THC/CBD oils while living in Washington State. My Doctor believed in it as well. I was on no pain killers and felt wonderful. Unfortunate circumstances now has me living on the opposite coast in a state that JUST now is opening Medical for patients for the oils, but dispensaries will not be available until the end of the year (hopefully). I have been without them for about 6 months now and my numbers are not as good. I haven’t felt as good as I did when I was on the oils and have to take 10m of oxycodone for neuropathy in my feet and some pain throughout my body. I despise taking prescription drugs. Medical THC/CBD should be available for anyone that needs it and I find it appalling that every state does not have it. I am scared that my Myeloma will return or I will develop another cancer but praying every day gives me strength. (Most of the time) God Bless anyone having to live with any kind of cancer.

  • Tue Jul 9, 2019