[Beth Pilot]

LeAnn,
I am a 53 year old white female. I was diagnosed with MDS in Dec. 2013 after my hemoglobin dropped to 4.6 and then 5.9 six weeks later. (I joked that somebody was stealing my blood and I wanted a doctor to find out where it was being taken.) I was in shock and extremely scared when I heard my diagnosis. I was diagnosed with fibromyalgia in 1999 and found that I had to do the research to find out what that was and how to best deal with it. After going through the soul searching part to find out how I really felt about dying, I tried to listen to my body and not overdo it, and research any information I could find about MDS. I also used what I learned to try to educate my friends and family as well as co-workers. Trying to answer their questions (after pushing them to ask me), helped me to keep digging for information.
I took the Vidasa shots starting in Jan. 2014. They gave me 2 shots each day in a fatty part of my body. It helps if you plan these out carefully, when you see the chemical rash/soreness that happens you’ll understand that. I just popped into the infusion center at my cancer clinic (it was only 2 miles from where I was living) each day for 5 days. I tried to start in belly fat (my stretch marks made good already numb places for this). They’d do 2 shots on right belly, then the next day it’d be 2 shots on left belly, then 1 shot on each outer thigh (don’t tighten up!) and then 1 shot on each back of arm fat, and then back to 1 each side on belly. I found out that my arms couldn’t stand the shots after awhile so I had to really plan that out. You probably want to skip from 1 area to another so you don’t bunch them up. They do get quite sore, but usually by the following Monday most of that was gone.
You need to always remember: there is a medication that will help you through all of this….you need to ask for it and you need to take it. I always took 1 Zofran about 30 minutes before I got my shot. Then within 2 hours after the shot I took a Phenergan. I’m sure there are those who are screaming “no” right now but I’m telling you to find that rhythm that works for you and stick with it, unless you find that you need to adjust it. I took Ativan for uncontrolled crying and/or that feeling that you’ve lost your sanity. It also helps for mild pain and for mild nausea (I found that out while I was in the hospital for transplant). Then there are pain pills. I took Tramadol and if it was too bad oxycodone. Do not take it all at 1 time, you need to find out what works. Caution: do not take these if you don’t need them because if you go for transplant you will want to have these as part of your Arsenal. I think of fighting cancer, not surviving it.
So, Vidasa shots do burn and cause a sore spot like a bruise. That will pass, though. Find something you can eat, preferably protein strong. I found that I had trouble with dry foods, like a sandwich had to have enough moisture for me to not notice the bread or toast it was on. Give yourself a break and go with what your body can handle during those shot weeks.
Ok, 2 shots each day for 5 days, then just blood work for 3 weeks. Then back to 2 shots each day for 5 days. I did that from Jan. to Sept. last year. By Sept. my bone marrow biopsy showed the MDS was at bay, ready for me to receive a stem cell transplant. My donor was from Germany, not related. But apparently we were stem cell besties because my issues have been limited and I no longer take the tacrolimus to combat rejection. Nobody really asked me whether I wanted a transplant, I think I didn’t really have a choice (like transplant or die). I’m not complaining, I just noticed a lack of discussion there.
I truly wish you good luck in your treatment. i don’t know how you’re going to get the shots done from so far away, but I know that once you start making that trip it just becomes part of your life. Make sure you have somebody with you to drive just in case you can’t. And remember, you may not have ANY problems, so don’t over stress about it. It is a chemical shot, so it does have to be administered by someone who has been trained in that.
Please feel free to ask me anything. I’ll tell you all I can about my experience, just remember that your experience could be very much better or worse than mine. Please let me know how you’re doing.

[Beth Pilot]

I had similar problems with running out of breath and not being physically able to do what I had been able to before the “symptoms” started. When I went to have my TSH tested to see if the Synthroid I was taking was out of whack, the doctor’s office called me to tell me that my hemoglobin was 4.6. After an overnight blood transfusion, I went home and tried to feel better. I was 51 when that happened, fall of 2013. About 6 weeks later, hemoglobin dropped to 5.9 and I was off to get another transfusion. That’s when a hematologist/oncologist was called in and after BM biopsy discovered that I had MDS. They said I was very young for this cancer.
I remember riding my bike behind the mosquito fogging truck in the summers when I was a child, along with some friends I grew up with. I contacted them and discovered that 1 has been diagnosed with AML. Yep, DDT is not good for humans.
I had the vidasa shots each month for 9 months and then had a stem cell transplant. The vidasa shots were hard for me, even though my doc kept telling me that some people work during that treatment phase. Transplant was very hard, but I have muddled through. Chemo brain is real, and if you add fibro fog (I have fibromyalgia) sometimes I have forgotten my thought in mid sentence. I just go with it and make sure everyone knows that I’ll tell them when or if that thought comes back to me.
I strongly recommend that you contact the LLS for assistance, as well as Be The Match. These were my 2 greatest resources for information during all of the confusion that set in immediately after diagnosis. The people I spoke with went way over and beyond anything I asked to get me information or answer questions or calm a fear.
I recently celebrated my 1 year transplant birthday. I’m 100% donor and so far MDS free. I am dealing with some chronic GVHD issues that have taken a toll on my “I’m going back to work ASAP” outlook. I’ve had to just adjust my attitude to “I’m going to do as much as I can today and be happy that was able to do that”. For a previously very independent woman, that adjustment has not been easy, but it gives me a direct goal to work on.
Nobody really mentions that GVHD can affect your muscles, unless you dig for that info. This has been my malady so I’m interested in more information about the chronic GVHD issues that don’t seem to be as widespread as maybe mouth sores or skin rashes.
Thank you for this forum….

[Author]

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