Hello out there: I haven’t shared in... - SHARE Metastatic ...

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Hello out there

Ibelong profile image
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I haven’t shared in sometime. I thought I would update everyone. It’s been almost a complete 8 rounds of Navelbine and Gemzar. This new chemo will be given until it doesn’t work. Thus far it has stabilized me no growth and unfortunately there has been no retreat in both the bones and liver. It has given me some extreme issues and we have had to adjust at least 4 times to help me. Still by day 4 I still get a fever. It just dose not go over 100.4 though any more. I hated those hospital trips and that antibiotic, ick. Never an infection. The antibiotic was given just in case. Today the biggest worry still is my plummeting white cell and absolute neutrophil count. This was a great concern so they put me on Neulasta. I wasn’t getting complete cycles and or was having to postpone rounds due to low counts. With the Neulasta came a slight allergy. Unfortunately it gives me fevers and e tremendous pain. I can control the pain with Claritin but it dose resolve all of it. I asked not to have it. I was told no Neulasta no chemo. There is times the Neulasta had not brought the counts up enough for chemo so, it’s to risky and dangerous to go without Neulasta. Sometimes it gets it just at the verge of high enough. It never is in the normal range. But, we are getting close. I think we got the recipe for success correct now and will be able to get each cycle complete even with the issues I have. I am hoping so. I finally have had a complete round after a week postponement but, it was a complete round. Tuesday I will find out if my luck continues. Other side effects are poor hair growths and thinning everywhere. I am glad after my first chemo with taxotere let my hair grow back thick. Lastly it’s the fatigue. I nap all the time and sometimes feel I can never get anything done. For example it took 9 mo this to loom knit a pair of socks. I was just learning but, WOW! They were supposed to be a bitrthday present in November so I started in October. Then time passed. Thought they would be for Christmas. Time passed. He got them on the first day of the summers first heatwave. I hear wool is breathable. He was still excited.

I hope all you out there are finding the right treatment and managing through the side effects while never forgetting to live simply, enjoy the small things and make everyday an adventure.

I am facilitating a peer to peer support group. What kind of topics would you like to discuss if you were in this kind of group? If you are in this kind of group what were the best topics you remember discussing?

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Ibelong
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Kateds profile image
Kateds

This is my first time posting. I've been stage 4 de novo since September 2016. Your post moved me so much. I just want to encourage you to hang in there. You are very brave and anyone would be happy to receive a handmade gift, especially if it is from someone they love. Blessings. 👍

Ibelong profile image
Ibelong in reply to Kateds

I was too de novo since diagnosis in 2007. I am looking forward to reading more of your posts.

SusieIM profile image
SusieIM

I hear you, I am glad you checked in with us. I also tired easily. As you say, live simply, make life an adventure.

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