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Robin Downing

 

Las Vegas, NV; robindowning62@yahoo.com

1962 / Class of '06 / Type: IgA / SCT, Velcade + Doxorubicin, SCT#2 / Remission, relapse / Updated: 1/13

I was first diagnosed May 23, 2006 after a bout with the flu. I had gone to the ER the beginning of May with horrible stomach pains (I have to be really sick to go to the Dr.) They put me on an IV, ran CBC and sent me home with a referral to a family Dr. I made the appointment and she said that I was very sick, severely anemic. She ran another CBC panel and had me come back the next week for results. I never made it back in to her office. She called a few days later and I was to be admitted. My hemoglobin was 3.5 -- normal is around 11 -- so into the hospital I went.

I spent a week, over Mother's Day, in on Thursday and out the following Thursday. They ran every series of test imaginable, CT scan, Bone survey, heart test, kidney test, stress test, MRI. I was transported to another facility when the CT Scan was down. And the final test bone marrow biopsy, all they would say is that I was severely ill. I had seen every Dr: internist, cardiologist, oncologist and my new family Dr. The oncologist is the one that delivered the news I had Stage III Multiple Myeloma. I had never heard of it.

When I got out to the hospital I researched everywhere, internet, bookstores, library, and had a little bit of a handle on it when I went to his office. I would start treatment immediately the treatment would be Thalomid and Dex, it took awhile dealing with insurance to get the Thalomid, it was the end of June before I would start. The idea was to start treatment and do a autologous stem cell transplant. I went to UCLA in July to start the workup up and see where I was and if I was a candidate. I was, and we would start working towards that. The Dex messed with me -- after a time neuropathy was really bad, tingling, painful sensations up and down my legs to my feet.

During this time I continued to work. I would go to the clinic and go back to work afterwards. We couldn't afford my not working since Nevada does not have disability. I only had a short term policy through AFLAC (which was wonderful) but I was saving time for when I would do the transplant. I only had 90 days to use.

In November I started Neupogen, the self-injected shots. My husband would joke and say, "Oh, let me give the shot." In December I went to UCLA had a port installed and my stem cells harvested, and went back Dec 18 and would stay until the 6th of January. Being in the hospital in isolation over the holidays was horrible. We live in Las Vegas, my husband still had to work too and my daughter, then 12, went to Oklahoma to be with her brother over the holidays. They spent Xmas eve with me and she flew out the next day.

After getting out of the hospital I went to a hotel for patients for a week waiting for my numbers to keep rising. The 6th of Jan of was good to go home. I stayed out of work until the end of February.

I was feeling good, going to the Dr when I was supposed to, was not on any maintenance drugs, except for Zometa at first 2x per month then 1x per month. I continued going, then from about Sept 07 to Jan 08 I did not go. I kept missing my appointments, I wanted to get through the holidays, I was feeling fine (I was kidding myself.) I went in Jan 08 and did not go again until April 2, 2008. By then I was in trouble again, I knew I was. I felt very tired all the time and my husband noticed it also, but I was so busy with work and keeping up with everything else. The Dr scheduled a bone marrow biopsy and it came back with my 50% plasma cells. My IgA was at 2400 anything above 410 is bad. I had been laid off at the end of March due to the economy and decided to stay off work and file for Social Security Disability. It is in the process. We have started treatment using Velcade and the new drug Doxorubicin. I do a 21 day cycle and he wants to do this for 4-6 cycles. The 1st, 4th and 8th and 12th day is Velcade with Dox on the 4th day, then a 10 day rest.

I am nauseous usually in the am and maybe once throughout the night, not every day. The Dox is very sensitive, no heat, no hot baths, no hot liquids for 1 day prior and 3-5 days after. It is difficult living in Las Vegas where it is so hot anyway. I feel like one big hot flash. I am on my first 10 day rest.

The thing with this disease is I never felt sick, I never had the fractures or lesions on my bones, but yet I was stage III. I was tired all the time, my hip hurt, I thought because of an old injury. Nothing that ever took me to the Dr, just a slip in the snow a couple of years ago. Like I said before, I am not one to run back and forth the Dr. I bet I can count on my hands with fingers left over how many times I had been to the Dr in the past. Of course not since this disease.

I am 46 years old, I have a 13 year old daughter and a 26 year old son. My husband and I got married Jan 1st of this year. He has been wonderful. This time around he is seeking counseling and getting counseling for my daughter. She has managed to stay an A Honor student, but I am sure she needs to speak to someone. Her biological father was killed by a train last year and she never really talked about it. I am overweight. Prior to being diagnosed, I had finally lost 40 pounds and was feeling good, well with the Dex I put on 60 pounds. I know I need to lose weight but to me that is not a priority. My concern right now is, will I see my daughter graduate from High School? But I have hope, we kicked it once and it stayed at bay for 15 months so I have do have hope. I will not give into this disease. They are doing research all the time.

We are looking at possibly another stem transplant but we will wait and see.

My Dr says that my attitude helped the first time, I tried to stay positive, and I do have a lot of hope. The first time around I didn't want everyone around scared so I stayed upbeat. This time I am more emotional and I tell the people I love that I am having hard time. I called my son the other day in tears (my daughter wants to live with him should something happen.) As a surprise he is flying in today for Mother's Day, I have not seen him for 2 years, I have missed him so. And he will come out again in June for a houseboat trip we have planned.

November, 2009: Here is it November 2009 and I am surviving. I am going to the Huntsman Cancer Center in Salt Lake City on Sunday. There are two Doctors that specialize in Multiple Myeloma. We are doing testing to see if I am a candidate for another Stem Cell Transplant. One of the reasons for their success rate (10 year survival) is that they do a tandem transplant they do the first one and 6 months later they do a second one. I am excited to meet them. The Doctor I currently go to actually studied under these doctors.

For the past month I have been on Revlimid, an oral chemo drug along with Dex. I take it for 21 days and have a 7 day break. It seems to be working my IgA is 538 down from 1578 in January. I feel good, except for the hip and leg pain and now my ribs. But I am good. I was doing Immunotherapy 1x per month and he stopped that in July, said my immune system is much better. Although since I have not had any immunotherapy I have been sick more often with Bronchitis, sore throats, but he wanted to give my body a rest. We are now waiting to see what Dr Zanguria has planned. I will be getting the new test for this disease, P.E.T. scan. Apparently it can see the hot spots as to where the cancer is now compared to an MRI which tells where the cancer has been.

I will keep you posted. Like I said I am very excited. I will test for two days then meet with the Dr on Thursday with a minimum of 2 hours consult. When is the last time any Dr gave you two hours of his time?

My support system is great, my son moved from OK this year and is staying with us helping out with my teenage daughter. I call this my disease of inconvenience, I really don't have any symptoms per se, not like some of the other folks I have talked to or seen their stories. My prayers are with them and I count my blessings.  

May, 2010: I am currently in Salt Lake City receiving treatment at Huntsman Cancer Center as an outpatient. I had my stem-cell transplant last week and engrafting as I write this. The experience the is time was much better than my experience at UCLA 3 years ago. I did not get the mouth sores or the vomiting as I did before. I think being treated as an outpatient made a big difference. It helps with the morale and being able to be in your own bed and come and go as you please really helps. I am looking forward to a long survival Dr Zangari has a track record of around 10 years, his longest is 21 years. So I am hopeful. It has been a long battle, one that I am ready to put behind and start living my life. I have a lot to live for, my son got married and they are expecting which I am thrilled. I have step grandchildren but that is not the same. My daughter is turning 16 this summer and we have some awesome plans, a road trip for her to get her driving experience. We have a houseboat trip planned with the family. It has been 4 years since I was first diagnosed and it has been a bumpy ride. But with all the support and love out there I am getting through it.

October, 2011: My stem-cell transplant was a success. I did 1 year of Revlimid with Velcade and Dex. I am still on Velcade and Dex and hopeful when I return to Utah in November he will pull me off of it. I am completely in remission, no sign of the ugly beast at all. He told me in July that I can say I beat it. My labs continue to be great. This has been a long 5 years. The emotional, financial rollercoaster changed my life entirely. I am one of the lucky ones, there are so many that have lost the battle, friends. I always ask did I do something wrong, eat the wrong foods, live in the wrong area, was it something that just laid dormant for years and then reared its ugly head or was it "just because." I will never know the answer. My biggest fear is that somehow it is genetic and my children will get it one, Lord I hope not. I live each day to its fullest, I am truly blessed.

January, 2013: Well, I had 2Ĺ years of remission and it has come back. I guess it had been rearing its ugly head for a couple of months. They put me back on Revlimid, I was still on Velcade and Dex. Then I got a bout of CMV, they found it when they did a blood test. Had to take Valcyte for 2 weeks before I could start the Revlimid. It is hard to stay as positive as I was in the past. This is the 3rd time, but they say 3rd times a charm, well we will see. I still have stemcells frozen so that is another option. I will go back to Huntsmans Cancer Center in Feb, if there is no change then we will try the new drug Carfilzomib. It has a couple of side effects that I am not comfortable with: Congestive Heart Failure to mention one. But someone said CHF or Cancer, well there you go, I guess CHF is more manageable than cancer.

I still have a great support system without them I donít know where I would be. I am no longer married, but that is for the best. I am moving on with my life one day at a time. This is a little set back but we will recover once again. I have changed my diet completely, less red meat, I had already was eating pretty healthy as I have diabetes, but that too will change as I exercise more and it has helped changing the diet.

My bones are still very strong and I am fortunate in that area, I have had no breakage.

 

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