I have made my decision

SophDan2

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.

Hi Mike

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

SophDan2 said:

Hi Mike

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!

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.

Ruthmomto4

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.

Mike

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.

Mikenh

Ruthmomto4 said:

Mike

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.

I'm familiar with the

I'm familiar with the chemical hand and foot warmers. They sell them in very large quantities at Costco. I might need to pick up a few boxes (different kinds for hands and feet). I have a Balaclava shirt which I bought a few years ago for running in freezing weather. Unfortunately the company that made them doesn't sell them anymore as I could use a few of them. Costco has Balaclavas and ski masks and I was thinking of getting both. The ski mask would be nice as it could go over my glasses if it doesn't have fogging issues. So some products that might help. Yes, it's the worst time of the year for cold sensitivity.

One of my coworkers showed me him using 7 mm nitrile gloves for work as he had a skin injury. That might be an option as well.

Lily Flower

SophDan2 said:

Hi Lily

Hi Lily,

So glad to see that you are coasting along to the finish line. During my 12 treatments, my hair thinned, but as you can see, I have plenty to spare. Cutting back the Oxy by 10% was a good move. I cut back 20% for 10 and 11 and eliminated it for the final treatment. I am dealing with slight neuropathy in the finger tips and toes, but I believe that it will improve with time and hopefully go away. It is not intolerable, but is a reminder of the just how potent that drug Oxy is.

It pays to communicate your wishes to the Onc , as I was ready to stop after #8, and my Onc said that it is better to reduce the dosage and contiunue on, and I'm glad I did.

You're almost there!

I hope that you enjoy the holiday season and may we all have a better year to come!

Thank you so much, Barry!

Thank you so much, Barry! Although I feel like a tortoise heading for the finish line but slowly and surely I will get there. Once I get there I know I won't have any regret because I know I made the right decision. Happy Holidays to you and your family! May 2018 be a great year for all of us!

Lily Flower

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.

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

Mikenh

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

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.

Lily Flower

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! 

 

Trubrit

Way to go, Lilyflower!

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

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! 

 

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.

Ruthmomto4

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.

You might not lose your hair

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!

abita

Ruthmomto4 said:

You might not lose your hair

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!

Thank you!

Thank you!

Lily Flower

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.

Thanks Abita! Hope you're

Thanks Abita! Hope you're recovering well from your liver surgery. Good luck on your next 8 rounds. Stay strong and think of your kitties. You can ask them to reduce the dose as it had helped me and I felt the difference. You won't be losing your hair. Just remember all these side effects are temporary. I'll be thining of you. If you need to talk, message me! 

Lily Flower

Trubrit said:

Way to go, Lilyflower!

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

Woohoo I got my little

Woohoo I got my little dancing man from Tru!Feel so honored. LOL!

I have since went back to work and believe it or not, it made me feel like everything has gone back to normal. No more pills to take, no more setting reminders to take the pills, no more forcing myself to eat just so I can take the pills. I feel fantastic, Blood work this Friday, keeping my fingers crossed! 

Mikenh

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

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.

Phil64

Lily Flower said:

Woohoo I got my little

Woohoo I got my little dancing man from Tru!Feel so honored. LOL!

I have since went back to work and believe it or not, it made me feel like everything has gone back to normal. No more pills to take, no more setting reminders to take the pills, no more forcing myself to eat just so I can take the pills. I feel fantastic, Blood work this Friday, keeping my fingers crossed! 

This is music to my ears and

This is music to my ears and it sounds SO GOOD! Congratulations!!! 

Lily Flower

Phil64 said:

This is music to my ears and

This is music to my ears and it sounds SO GOOD! Congratulations!!! 

It sure is, Phil. Thank you

It sure is, Phil. Thank you so much! 

Lily Flower

Mikenh said:

Glad you're done. I hope to

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.

Mike, thank you so much and I

Mike, thank you so much and I sure will.  Are you in your 3rd or 4th? If I remember correctly, you started your adjuvant in December, right? Believe it or not, before you know it, you'll be reaching at your last treatment!

Lily Flower

Since my completion of my

Since my completion of my adjuvant chemotherapy on 2/2/18, I had my bloodwork done last week. My WBC is almost back to normal but my blood platelets are still a bit low. My next CT scan (with contrast) is scheduled on 5/3/18. It's 2 months away and I'm already feeling jittery.

abita

Lily Flower said:

Since my completion of my

Since my completion of my adjuvant chemotherapy on 2/2/18, I had my bloodwork done last week. My WBC is almost back to normal but my blood platelets are still a bit low. My next CT scan (with contrast) is scheduled on 5/3/18. It's 2 months away and I'm already feeling jittery.

Those jitters are hard. Did

Those jitters are hard. Did you have tumor markers? If those went down, then you could try to remember that. My markers went down by a third and the pre surgery scan showed that the tumors shrunk by a third. I know not everyone gets tumor markers. Was your tumor removed before your chemo? So the scan is just to make sure no other cancer cells?