I have made my decision

Mikenh said:

You guys are inspiring for

You guys are inspiring for those of us just starting. This first week of Oxaliplatin has been rough but a lot of that is due to the weather. I'm thinking that I have seven more of these and, yes, it does feel daunting. I'm tracking how many days of side-effects along with the severity of the side-effects and may ask for a reduction right away (so I'm a wimp). We had about two inches of snow and 3/4 inch of ice on top of that and I went and cleared some off the car and that was rough on my fingers and feet. Then the snow plow honked so I needed to move the car so I cleaned enough to drive off and that was painful on the fingers. This is normal stuff for this area of the country in the winter so I will have to do this on a regular basis. It is possible that I'll get used to it or that my body will adapt.

Fortunately I have lots of long underwear, wool socks and other things to keep my core warm. But I'm thinking of getting some sheepskin insoles and maybe a new pair of boots to keep my feet warmer. I've chatted with a few people with Ranaud's on managing their fingers when it's cold too.

I'm not that concerned about my hair - it has thinned a bit over they years. If it thins too much, then I'll need to wear hats more often.

Unfortunately, there are 2 separate issues going on. It is unusual to be feeling the neuropathy after just 1 treatment. However, extreme sensitivity to cold happened to me 1 hour into my very first treatment. If you keep yourself warm (especially hands, feet, face and head) you shoulld be able to move on with the treatments. It might mean having someone else clean off your car or shovel snow for you.

I remember thinking "how am I going to get through the winter" early on in my treatments. I was fortunate to have my last treatment on November 8th, and the sensitivity to cold went away very quickly. Stay warm and plug on my friend!

Mikenh said:

I'd need to move or remodel

I'd need to move or remodel our house to keep myself warm all the time. It's hard for me to slow down from my usual pace of living.

my husband wears gloves all the time, in the house out of it, always. Get several pairs and keep them on as much as you can. The cold sensitivity is only going to get worse but he is adapting. They sell gloves with warmers built in them and you buy things to put in them people use them at football games. After a while just inhaling the outside cold air will be an issue for a few days so get a ski mask that covers your mouth.  It’s not all the time for him but on and off. The further out he gets the better. You both picked the worst time a year for this chemo here in New England oh also he finds wearing latex gloves still keeps his hands warm but he can still type on the computer to work.

Lily Flower said:

I know we all feel that way

I know we all feel that way in the beginning. I remember after my first treatment, I was so out of it and i was thinking good god I still have 7 treatments to go and I can't do this. After my 2nd treatment...same as the first and I wanted to quit. They reduced my Oxy on my 3rd and it made a difference and also my body probably got used to the chemo too. Our timing suck to be fallen into the winter time.

Sometimes I wonder what if we're all born bald and we wouldn't be worry about our looks. Think of all the money we save for hair products. Lol

I was thinking of the 1 of 8 thing this afternoon. Is there sufficient technology out there to get me through this? I just ordered the Balaclava from Amazon and may get some more hand warmers. Someone should come up with Rayauds.com.

I am so happy to hear you are through, and happy to see you post. 

Happy enough that I think you deserve our friend, the Happy Dancing Man 

Time to move forward, with the added personal strength that this journey has given you. 

Enjoy yourelf and don't (try not to) fret the CT scan. They will be part of your life now, for a long time. Precious time can pass by, if you spend it fretting. 

Tru

abita said:

I am so glad to hear things

I am so glad to hear things are going so well for you. I was wondering about you last night.  Glad to hear about the side effects not being that bad. Tomorrow I start the last 8 rounds of infusions following my surgery. I have had plenty of moments where I don't want to go through it because I don't want the side effects and I don't want to lose my hair. So your positive comments are very tiely for me.

maybe it will just thin out a little, that’s what happened to my husband. He lost most of the hair on his legs though, but for a girl that would be awesome!! You have made it through so much you can totally do this! Good luck tomorrow!

Lily Flower said:

Update

I had my last Oxaliplatin IV treatment on 2/2/18. I took my last dose of Capecitabine pills on 2/17/18. My treatment is a three-week cycle (Oxaliplatin IV drip every 3 weeks; Capecitabine pills every 2 weeks with 1 week for recovery). With a follow up of bloodwork and a CT scan pending for next month, I am now officially done with my adjuvant chemo therapy. 

I wanted to quit every time I had my treatment especially during the first 2 that I felt so sick and couldn't even get out of the bed. I didn't think I was going to make it to my last treatment. However my oncologist always encouraged me along my treatments, always there when I called if I had any questions. I believe without having a compassionate doctor, I wouldn't be able to complete all my treatments. 

Besides the sensitivity to cold, nausea, fatigue, some vertigo issue (during 3rd and 4th treatments), twitching eyeslids, spasms in my hands/jaw, and some numbness sensation I felt in my fingers, I'd say neuropathy isn't the worst side effect for me. Although at the end of my 7th treatment, I did started to feel some numbness in my toes which is still lingering. All the other side effects have wholly dissipated. My hair started to thin out after my 3rd but oddly it stopped shedding after the 7th. Even before I completed my last treatment I actually felt my hair started to fill in. Yay! 

 

Glad you're done. I hope to get there eventually. Please check back from time to time so that we know how you're doing.