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kansasgal I do have a question

Michaelynn
Posts: 67
Joined: Apr 2010

Hi

Is it true that chemo gets worse the further along you go. If so what kind of worse are we talking about. I have heard some ladies on the board saying they needed a blood transfusion near the end of treatment but is there anything else I should be aware of. The first chemo I had a lot of joint pain and very little nausea the second chemo I had less joint pain but lots more nausea. I go for # 3 on Wednesday. Any help would be appreciated.

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

For me I became much more fatigued as chemo progressed. My blood counts echoed how I felt. My numbers were right on the borderline by the time of my 6th infusion. The numbers kept falling with each round of chemo, but fortunately I had started out quite healthy other than recovering from the surgery.

The bone and joint pain remained about the same, and the nausea was not too bad and remained about the same. Each time, the first week I felt that lead weights were strapped around my legs and it seemed hard to lift them to walk. The bone and joint pain, especially in my arms and legs, was ever-present during the first week of each infusion and lessened to the point of being almost gone by the time of the next infusion (every 3 weeks).

I stayed pretty much on top of bowel issues. Because I have a severe case of diverticular disease, I already knew what I should be eating to keep everything running smoothly in my digestive/elimination system.

As time went on I began to experience peripheral neuropathy in my fingers and feet. Walking became actually painful at times while other times I experienced numbness or tingling. It became progressively worse with each infusion. It was at its very worst AFTER treatment ended! Now I no longer am experiencing the neuropathy.

My worst side effect was "chemo brain". Fortunately not everyone experiences this. I had this from the time of my first infusion. I felt that I had "fallen down the rabbit hole". I had never heard of it and did not know what was happening. I called it CRS syndrome for "Can't Remember S***". I was unable to remember, plan, "figure things out". I truly was unable to do my job and had to take a leave from work until the beginning of this year. I was unable to cook anything other than a fried egg or a hamburger. If I left the stove "for a minute" I forgot that I was cooking. Only the odor of something burning would bring me back. My husband had to take over. Laundry was quite a challenge. I could not remember that I was doing laundry, so I would forget to take the clothes from the dryer at the appropriate time. Most loads had to return to the washer at least once for another rinse and back into the dryer to get out the set-in wrinkles. My thinking is still not back to where it was before chemo, but I am continuing to improve.

I never needed any transfusions or injections to help bring up my blood counts. Some members of this board have had this problem, but I did not.

I hope you experience few of the possible side effects. Many women are able to continue working by taking a few days off at the time of each infusion. I did go into the office for a few hours the second and third week of each round, but I worked very slowly and felt very stupid. I worked "after hours" to avoid exposure to infections. I was not paid during this time. I mainly did payroll, quarterly reports, bill paying, and bookkeeping. It was very challenging and I made some glaring mistakes. I am still sorting things out! I was unable to help with any kind of planning or help in making decisions.

I'm glad to hear you are doing so well this far into treatment and I hope you will continue to do as well. Please let us know of any other concerns and we'll try to help!

A big (((hug))) from Sally

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