Living with Scleroderma

this is nothing but a curve ball

Chemotherapy 1-4 DONE!

on June 28, 2012

I just finished my 4th Chemotherapy of Cytoxan today. Just 2 more and I’m done.

People ask me why am I going through Chemotherapy. They ask me if I have cancer.

Scleroderma is not cancer. Chemo treats cancer by attacking the cancer cells. In my case, Cytoxan is supposed to help me with slowing down the progression of my condition.

With Scleroderma, my body overproduces (confused) white blood cells (anti-bodies) that are fighting my own body. This causes inflammation throughout the body and in my case, in my lungs. It’s the inflammation in my lungs that are causing the fibrosis.

The Cytoxan (aka Cyclophosphamide) is supposed to suppress the white blood cells and the inflammation in my lungs.

I forgot to post this photo from Chemo #2

Then from Chemo #3

and today from Chemo #4
Chemo 4

A lot of people are scared of Chemotherapy. I can’t speak for anyone else, but let me tell you my side effects from this treatment. I get hot flashes like crazy. I don’t sleep well (maybe with all the meds I’m taking as well). People say you lose your hair or experience hair thinning, I haven’t experienced that yet (but I’m always on a lookout for cute hairpieces ;P) Nausea and Vomiting? NOPE, I haven’t had that really. But the FATIGUE is unpredictable. I don’t know if it’s the treatment making me tired or my scleroderma. Either way, FATIGUE is something I’m trying to manage because I never know when it will attack.

On a good note, I get my COUGH free days up to 3 days after each treatment. It’s not a lot, but for someone who’s been constantly coughing everyday for 4 years, that’s quite an accomplishment.

I had to take a chest xray about a month ago and my Lung Specialist shows that my fibrosis was still progressing. My rheumatologist also read my last blood work and said the same was with my scleroderma. They say that the treatment takes a while to kick in the body and for the actual results (whether working or not) to show. So technically, i really have to wait until my last chemo and see if it did work for me or not.

I have another PFT (Pulmonary Function Test) scheduled in August. My Lung specialist tells me I’m close to being a Lung transplant candidate and the PFT will determine that. At first, I was a little excited for another alternative. Then when I got home and read more about it, I realized how dangerous the procedure can be. I’m not thinking about that now though. Tonight, I read some people online discussing how Cytoxan has helped and even improved their lungs. So we hope and pray that things can only get better from here =)


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