Chemo question....

eihtak · February 2015

Hi all,

So I am scheduled to begin chemo next week as part of my treatment for my recurrance of anal cancer. As of now, the plan is to receive 5FU/Cisplatin as I did initially 4 yrs ago. A few weeks ago I had surgery to remove the mass in my lung and I will not be getting radiation at this time.

When I went through treatment 4 years ago I was so very sick and in pain to begin with before even starting and after just a few weeks was hospitalized with complications. Although this was an unfortunate recurrance and I am healing from surgery, I still feel overall so much healthier (as strange as that sounds) than I was at that time.

I guess I've been pretty successful in moving on, as I don't clearly remember my reaction to chemo in the beginning. Now I'm wondering what to expect. I know we all react different to the same situation, yet I'm curious, were you sick right out of the gate, tired, or maybe not? Since I won't be getting radiation I won't be dealing with issues of associated pain.

My mood is a rollercoaster these days, as this diagnosis caught me way off guard and in the middle of completely enjoying life. Surgery was successful in removing the mass and (for today) I am confident that the chemo will give me some insurance so I can get back to where I was, although that confidence could fade before dawn.

Anyhow, what were your initial chemo side effects?

Thank you

katheryn

mp327 · February 2015

Katheryn

Like you, my memory has faded some regarding my treatment and how I reacted to the chemo--it was 6 1/2 years ago. However, I had very little nausea, and when I had queasiness, the anti-nausea meds (Ativan and Phenergan) were very effective. I did have severe fatigue. I got thrush in my mouth and my appetite eventually bottomed out. One thing to keep in mind though is that I received 5FU and Mitomycin, no Cisplatin, so I am unable to speak about the side effects of that drug.

I can understand your emotional ups and downs--this has to be difficult. However, you have always seemed like a very strong person to me and I think you are going to get through this. Will it be fun--no. Doable--yes! Sending you good thoughts and prayers!

Martha

Phoebesnow · February 2015

mp327 said:
Katheryn
Like you, my memory has faded some regarding my treatment and how I reacted to the chemo--it was 6 1/2 years ago. However, I had very little nausea, and when I had queasiness, the anti-nausea meds (Ativan and Phenergan) were very effective. I did have severe fatigue. I got thrush in my mouth and my appetite eventually bottomed out. One thing to keep in mind though is that I received 5FU and Mitomycin, no Cisplatin, so I am unable to speak about the side effects of that drug.

I can understand your emotional ups and downs--this has to be difficult. However, you have always seemed like a very strong person to me and I think you are going to get through this. Will it be fun--no. Doable--yes! Sending you good thoughts and prayers!

Martha

Chemo

I remember the first night I felt great. Someone mentioned that they put steroids in the first dose. I don't know if that's true. I took the nausea medflirtation morning and everyday I did chemo. It seemed to effect my stamina the second day. I remember my heart pounding doing the simplest tasks. I think Ihad more of a problem with the side effects after tx, with heart pounding, breathiness, problems with head rushes when getting up from sitting and the infamous neuropathy.

I pray that the side effects are minimal and the Lord will be at your side every step of the way!

eihtak · February 2015

mp327 said:
Katheryn
Like you, my memory has faded some regarding my treatment and how I reacted to the chemo--it was 6 1/2 years ago. However, I had very little nausea, and when I had queasiness, the anti-nausea meds (Ativan and Phenergan) were very effective. I did have severe fatigue. I got thrush in my mouth and my appetite eventually bottomed out. One thing to keep in mind though is that I received 5FU and Mitomycin, no Cisplatin, so I am unable to speak about the side effects of that drug.

I can understand your emotional ups and downs--this has to be difficult. However, you have always seemed like a very strong person to me and I think you are going to get through this. Will it be fun--no. Doable--yes! Sending you good thoughts and prayers!

Martha

Martha....

Thank you, I'll note the anti-nausea meds as the only one I remember taking was zofran or zophran (sp ?) but it was not very helpful later on in treatment. I expect my appetite to take a dive so have been enjoying all my favorite foods for the past several days! I truely appreciate your support and prayers.

katheryn

mp327 · February 2015

eihtak said:
Martha....
Thank you, I'll note the anti-nausea meds as the only one I remember taking was zofran or zophran (sp ?) but it was not very helpful later on in treatment. I expect my appetite to take a dive so have been enjoying all my favorite foods for the past several days! I truely appreciate your support and prayers.

katheryn

Katheryn

As I said above, it's been awhile and hard for me to recall all details. However, it occurred to me that in addition to the Ativan and Phenergan that I was given to take at home, I was also prescribed a drug called Emend that I took on the morning of chemo, then for 2 days following, for nausea. I think I was also given a drip of Aloxil and Decadron prior to infusion of the Mitomycin and hook-up to the 5FU pump. I know the Emend was for nausea and I'm pretty sure the Aloxil and Decadron were too. There are a couple of things I will mention about the Emend. First of all, it is very expensive! It comes in a sealed pack of 3 pills and would have cost me big bucks, were it not for my insurance covering it. I've had discussions on other boards about it and some peoples' insurance doesn't cover it, so definitely check into that if you discuss it with your doctor. Also, one side effect I had during the first 2-3 days of each chemo round was dizziness. My med onc felt that it was a side effect from the Emend.

I'm glad you are enjoying eating some of your favorite things and I hope that your appetite will not crash during treatment. May your side effects be as mild as possible. Hugs and prayers!

Martha

eihtak · February 2015

mp327 said:
Katheryn
As I said above, it's been awhile and hard for me to recall all details. However, it occurred to me that in addition to the Ativan and Phenergan that I was given to take at home, I was also prescribed a drug called Emend that I took on the morning of chemo, then for 2 days following, for nausea. I think I was also given a drip of Aloxil and Decadron prior to infusion of the Mitomycin and hook-up to the 5FU pump. I know the Emend was for nausea and I'm pretty sure the Aloxil and Decadron were too. There are a couple of things I will mention about the Emend. First of all, it is very expensive! It comes in a sealed pack of 3 pills and would have cost me big bucks, were it not for my insurance covering it. I've had discussions on other boards about it and some peoples' insurance doesn't cover it, so definitely check into that if you discuss it with your doctor. Also, one side effect I had during the first 2-3 days of each chemo round was dizziness. My med onc felt that it was a side effect from the Emend.

I'm glad you are enjoying eating some of your favorite things and I hope that your appetite will not crash during treatment. May your side effects be as mild as possible. Hugs and prayers!

Martha

Martha....

Hi, and thanks again for your insight. I had sent a message to my doctor earlier this morning with a few concerns regarding taking my breast cancer med as well as digoxcin that I was prescribed after the surgery and any interactions with the chemo. I asked about some of the meds you mentioned for nausea as well as insurance coverage. I am happy to say that Decadron and something else (can't remember the name now) were already in the plan as well as Emend being standard when given cisplatin now. And, it IS covered for me! Rather than just messaging me back, his assistant called and was very reassuring which made me feel good. She said there have been several changes in the past few years, one small change is not just expressing the importance of hydration but administering extra IV fluids. I will return the second day to have two more bags of fluid, although a hassle to go in, also adds some sense of security in being closely watched. I'm still anxious but ready to get started as well.

Thank you again,

katheryn

qv62 · February 2015

eihtak

Wishing you all the best with your upcoming treatment. I will send prayers your way for sure. In addition to the zofran, I had ondenesteran (sp) it was a melt away tab for the naseua and worked very well. As for the side effects of the chemo, fatigue was the main culprit. Keep us posted

mp327 · February 2015

eihtak said:
Martha....
Hi, and thanks again for your insight. I had sent a message to my doctor earlier this morning with a few concerns regarding taking my breast cancer med as well as digoxcin that I was prescribed after the surgery and any interactions with the chemo. I asked about some of the meds you mentioned for nausea as well as insurance coverage. I am happy to say that Decadron and something else (can't remember the name now) were already in the plan as well as Emend being standard when given cisplatin now. And, it IS covered for me! Rather than just messaging me back, his assistant called and was very reassuring which made me feel good. She said there have been several changes in the past few years, one small change is not just expressing the importance of hydration but administering extra IV fluids. I will return the second day to have two more bags of fluid, although a hassle to go in, also adds some sense of security in being closely watched. I'm still anxious but ready to get started as well.

Thank you again,

katheryn

Katheryn

I'm glad to hear you will be getting some anti-nausea meds via IV prior to the infusion of the chemo drugs. Also, getting the Emend is a very good thing and I'm glad your ins will cover it. Just be aware that one of the side effects can be dizziness. I also think the IV fluids on day 2 is a very good idea. I'm part of the reason I felt so crappy at times was because I was dehydrated. It sounds like you're in very good hands. I will be thinking of you and I wish you a smooth leg of this journey.

Martha

jcruz · February 2015

what I remember

It was 2 1/2 years ago so my memory of it hasn't faded too much. I did get an anti-nausea med by IV prior to the mytomicin. I had prescriptions for zofran, compazine and ativan. Compazine was useless, zofran better. I was nauseous only one day in each of the two weeks of chemo. I was completely wiped out by the second day but perked up a little by the next week. I had thrush both weeks and some appetite loss. I depended on protein shakes that I made to get calories in. It's a bit hard to separate the side effects of the chemo and radiation. Neupogen shots and a transfusion for low blood counts. And IV hydration because I just couldn't drink enough water.

TraceyUSA · March 2015

Katheryn

Sending you well wishes and prayers as you begin your treament this week.

I did the Mitomycin/5FU about two years ago and took Zofran from the start as prescribed (I believe they gave me an IV dose when they hooked up the fanny pack on the 1st day) and I never experienced nausea. I had diarhhea the whole way through treament and they told me this was a side effect of the chemo & radiation. I also had pretty bad mouth sores and used salt water & an over-the-counter rinse (the prescription"magic mouthwash" only made me gag and didn't really work). I was also told to use plastic utencils to eat with and used Biotene toothpaste with a baby toothbrush. Hopefully, you'll have miminal side effects.

I'll be thinking of you,

Tracey

sandysp · March 2015

Thinking of you, Kathryn

I am catching up with everyone and these developments came as a surprise to me. I am glad they got out the affected lung and there was nothing in the margins. That is all good news.

You will be in my thoughts and prayers going through the chemo. God bless you. You are one strong lady who I look up to a great deal on this board. So continue to hang in there. We are all rooting for you here that you will get through this successfully with minimal side effects.

Fondly,

Sandy

shamayim · August 2015

Phoebesnow said:
Chemo
I remember the first night I felt great. Someone mentioned that they put steroids in the first dose. I don't know if that's true. I took the nausea medflirtation morning and everyday I did chemo. It seemed to effect my stamina the second day. I remember my heart pounding doing the simplest tasks. I think Ihad more of a problem with the side effects after tx, with heart pounding, breathiness, problems with head rushes when getting up from sitting and the infamous neuropathy.

I pray that the side effects are minimal and the Lord will be at your side every step of the way!

chemo and steriods

Phoebesnow,

They put steriods in my first dose. I felt great and talked until midnight to my sister, who could not believe how excited and upbeat I was. Next day felt l felt OK but remember trying to sleep second night, heart racing and thinking I'm going to have a heart attack before the morning. I think I was awake all night, inbetween that and making sure the portable pump was working. My PET Scan showed that I had a rare congential artery defect that I didnt know about (and it usually kills you when you are very young,) so I was also worried about this in addition to all the toxic chemicals and my port. The PET scan also showed a small kidney stone & I asked my oncologist what to do if I should pass it during treatment! She just hung her head, shook her head, and said drink lots of water... Thankfully it stayed put!!!

Shamayim

RoseC · August 2015

Hi Katheryn

For me the chemo was not that difficult (well, that's said with a side note - I did have a very bad reaction several months out -TTP - but from the mitomycin, not the 5FU).

I had mouth sores the week after the first dose - my oncologist prescribed a mouth rinse that worked very well and he cut down the dose of chemo for the next go-round (I'm sorry, but I don't remember which he cut down, the 5FU or the mitomycin - I think it was the 5FU).

I had mitomycin C so can't speak to cisplatin. The one thing I do remember is that my appetite took a nosedive. I ate a lot of peanut butter during those days (and still do) - it's got protein and was easy on the stomach, for me anyway.

I was given an anti-nauseau injection prior to the chemo - don't remember the name of it. And some pills to take at home. A friend of mine, who had the same diagnosis, gave me the very sage advice to take the pills before you got nauseaus. I followed her advice and never got - quite nauseaus - but did lose my appetite. In retrospect, I wish I had talked to my oncologist about the lack of appetite - he may have prescribed something to help out in that department. I think maybe that the lack of appetite (and thus protein) may have aided the TTP in forming. Just my feeling and again, the TTP was due to the mitomycin, not the 5FU.

I got really tired but not until the fourth week or so. Don't know if it was the chemo, radiation, stress, traveling back and forth - or what. Probably a combination of all those things.

I sincerely wish you all the best - I've been following your posts for a long time - you are probably the nicest person I've ever had the opportunity to know (virtual-like).

My prayers and sincere good wishes are with you always.

jad345 · August 2015

RoseC said:
Hi Katheryn
For me the chemo was not that difficult (well, that's said with a side note - I did have a very bad reaction several months out -TTP - but from the mitomycin, not the 5FU).

I had mouth sores the week after the first dose - my oncologist prescribed a mouth rinse that worked very well and he cut down the dose of chemo for the next go-round (I'm sorry, but I don't remember which he cut down, the 5FU or the mitomycin - I think it was the 5FU).

I had mitomycin C so can't speak to cisplatin. The one thing I do remember is that my appetite took a nosedive. I ate a lot of peanut butter during those days (and still do) - it's got protein and was easy on the stomach, for me anyway.

I was given an anti-nauseau injection prior to the chemo - don't remember the name of it. And some pills to take at home. A friend of mine, who had the same diagnosis, gave me the very sage advice to take the pills before you got nauseaus. I followed her advice and never got - quite nauseaus - but did lose my appetite. In retrospect, I wish I had talked to my oncologist about the lack of appetite - he may have prescribed something to help out in that department. I think maybe that the lack of appetite (and thus protein) may have aided the TTP in forming. Just my feeling and again, the TTP was due to the mitomycin, not the 5FU.

I got really tired but not until the fourth week or so. Don't know if it was the chemo, radiation, stress, traveling back and forth - or what. Probably a combination of all those things.

I sincerely wish you all the best - I've been following your posts for a long time - you are probably the nicest person I've ever had the opportunity to know (virtual-like).

My prayers and sincere good wishes are with you always.

Hi Katheryn

Last year I had exactly the same as you - cisplatin and 5FU no radiation. I found that for the first week after each cycle, I felt tired and queasy but the next 3 weeks I felt fine. It got a litle worse as it went on but not much. I think my esophagus got a bit sore at the end from the 5FU but I didn't have much else. I was very careful about my mouth, swishing warm salt water around it after every meal and I didn't get any mouth sores. I will be starting a new treatment of cisplatin/5FU in the next week or two so maybe we should compare notes!

Jackie

nicotianna · August 2015

jad345 said:
Hi Katheryn
Last year I had exactly the same as you - cisplatin and 5FU no radiation. I found that for the first week after each cycle, I felt tired and queasy but the next 3 weeks I felt fine. It got a litle worse as it went on but not much. I think my esophagus got a bit sore at the end from the 5FU but I didn't have much else. I was very careful about my mouth, swishing warm salt water around it after every meal and I didn't get any mouth sores. I will be starting a new treatment of cisplatin/5FU in the next week or two so maybe we should compare notes!

Jackie

5FU/cisplatin

Hi Jackie - I have been on cisplatin & 5FU for 4 mos. in varying doses. I think everyone responds a little differently & every round I have rec'd is not the same. I have had constipation from the anti-nausea meds, Amend & Zofran. I do have fatigue & nausea but the cancer also causes that as well. I have not had any mouth sores; mild tingling in the feet; cold sensitivity; loose stools after the Amend & Zofran wear off. The doses of cisplatin have been 50mg/m2 & 75 mg/m2 over 28days along w/5FU over 4 days. Then cisplatin 40 mg/m2 w/5Fu over 40 hrs. every 14 days x 4 rounds. Now on day 9 & starting to feel fairly ok.

Nic

Phoebesnow · August 2015

nicotianna said:
5FU/cisplatin
Hi Jackie - I have been on cisplatin & 5FU for 4 mos. in varying doses. I think everyone responds a little differently & every round I have rec'd is not the same. I have had constipation from the anti-nausea meds, Amend & Zofran. I do have fatigue & nausea but the cancer also causes that as well. I have not had any mouth sores; mild tingling in the feet; cold sensitivity; loose stools after the Amend & Zofran wear off. The doses of cisplatin have been 50mg/m2 & 75 mg/m2 over 28days along w/5FU over 4 days. Then cisplatin 40 mg/m2 w/5Fu over 40 hrs. every 14 days x 4 rounds. Now on day 9 & starting to feel fairly ok.

Nic

Shamelyn

Good morning! I'm off for some surfing this morning, seriously hot in So Cal today. Interesting story about finding that defect. Often people's cancers are found when they go in for something else. Just like your heart defect was found during your cancer journey.

When posting reply at the bottom of the thread this way you will be part of the stream that is viewed. Your comments are getting lost.

Cant fix that typo on my I pad, should say When posting a reply do it at the end of the thread.

Chemo question....

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