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Starting chemo on Feb 15

pakb56
Posts: 141
Joined: Jan 2012

Had hysterectomy with ovaries and fallopian tubes removed. Pathology came back with clear cell endometrial adenocarcinoma with riht falopian tube involvement. Subsequent lymph node dissection had 1 lymph node out of 21 positive. Starting carbo taxol chemo..3 rounds followed by 6 weeks chemo and 3 more rounds of chemo.

I am scared of the treatment and future outcome. I am hoping I tolerate the treatment well.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Hmmm....did you mean 3 rounds of chemo followed by RADIATION then three more rounds of chemo. That is what I"m getting. Finished my fourth round of chemo with two more to go! The end is near. The good thing about having this break is it gives your body time to recover from the effects of chemo. The bad thing...you get to loose your hair twice! Oh the joy.

I am not getting the exact same chemo as you (Ifoxfamide/Taxol), but my experience with the Taxol which is the primary cause of hair loss is joint pain a few days after receiving it that lasts a few days. I have not been nauseous or really had too many issues. My hair loss started exactly two weeks after my first infusion of taxol and the same thing has happened during the second part of my treatment.

I know it seems like it will last forever...but believe me....it goes pretty fast. Just drink tons of water and eat alot of protein and don't let yourself get constipated. I found alot of nice scarves at headcovers.com, but there are plenty of sites out there that sell them and I bought three wigs which I only wore at the beginning...they itch.

Take care,
Cindy

Ro10's picture
Ro10
Posts: 1332
Joined: Jan 2009

Glad you are making it through. Sorry you still have the joint pain. I have been fortunate not to have had any pain. The only time I had the joint pain was after Neulasta shots.

Good advice about the fluids and protein. I use apple juice to prevent the constipation.

Good luck with your last two treatments, and may you dance with NED for a very long tome. In peace and caring.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Hope all is going well for you in your chemo. Sounds like you tolerate it well, which I suppose, makes it a little easier to go through again. Funny but my hair loss seems to be bothering me more this time around.

Take care,

Cindy

pakb56
Posts: 141
Joined: Jan 2012

Yep, that is what I meant. I was a little surprised when he told me the radiation was 5 days a week for 6 weeks. How long was the wait from chemo round 3 and radiation then back to chemo? I am hoping all goes well with no delays. I haven't even started and already counting the days till I am done.

It is good to hear you got through it with minimal issues. I hope I don't have issues with joint pain as I have had issues with this for years.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I think the delays between chemo and radiation has caused me more stress then anything else. After my third round of chemo I waited three and a half weeks to start radiation. My last radiation treatment (internal) was December 23. I started chemo again on the 25th of January. Not sure if this is normal or not but it annoyed me. In retrospect, I think they want you to have a recovery period between all the treatments.

Take care,
Cindy

Ro10's picture
Ro10
Posts: 1332
Joined: Jan 2009

Everyone is scared before they start treatments. The fear of the unknown. I hope you find that it is not nearly as bad as you anticipated. I also had the Taxol/Carbo sandwich treatment. Like Cindy said, I lost my hair twice during that round. Just as it was coming in, it fell out again. After I finished that round I had an 18 th month break. Then I had 7 more treatments. Had to switch to Cisplatin for the last four treatments. Had a 7 month break, and now I start more treatments with Taxol/ Cisplatin. so I will have hair loss for a forurth time.

I have never had the leg pains or body aches that many have mentioned from the Taxol. Other than losing my hair the first rounds of chemo, I had minimal side effects. I hope this happens for you, too.

Feel free to ask lots of questions. There are so many caring, knowledgeable women on this site. Someone will probably have an answer forany of your questions or concerns. This site is a great place to vent or share your worries, too.

Welcome, and sorry you have to join the journey none of us ever wanted to be on. In peace and caring.

pakb56
Posts: 141
Joined: Jan 2012

Thanks again for your positive feedback. How did you cope with the hair loss? I think I might fear that more than the treatments. I feel that people will be looking at me and thinking oh she has cancer. In the big picture it is a small thing but I almost feel embarrassed that I have cancer. Does tht sound weird?

I joined when I first found out I have cancer and been reading the posts. I have found them useful and can feel the caring.

JoAnnDK
Posts: 276
Joined: Jun 2011

Pakb56 wrote " In the big picture it is a small thing but I almost feel embarrassed that I have cancer. Does tht sound weird?"

Not at all. The hair loss is the outward manifestation of all that is going on....and it is hard to share something so personal.

JoAnn

jazzy1's picture
jazzy1
Posts: 1375
Joined: Mar 2010

This was one of the most difficult things I had to endure during my treatments. Our society is very visual and when people look at us with no hair or wig, it's as if they know we're sick. I forced myself to talk with people while I was wearing a wig or scarf....knowing with time I'd feel a new comfort level.

You'll find as time goes, you will not think much about having no hair. Try to have fun with different wigs and scarves...almost like playing dress up as kids.

Time heals all!!!

Best to you and plse keep us posted on your progress, that's what we're here for my friend~

Jan

pakb56
Posts: 141
Joined: Jan 2012

Thanks for responding and letting me know I am not alone in what I am thinking and feeling and that others have had the same. I have shared my diagnosis with those closest to me but once I have the hair loss everyone will know. Receiving your support is wonderful.

Thanks again,
Pat

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Pat,

When I first lost my hair I was self conscious about it when I returned to work. I wore a wig that didn't really resemble my original hair style but its possible some people didn't know. The itching drove me nuts, so I switched to scarves....then almost everyone knew. I painted my head green on Halloween and wrote the word "boo" on it. After that, I didn't care anymore. I stopped wearing my scarves in the middle of January when I had about a quarter of an inch of hair. It was a nice break. Unfortunately, just like clockwork, my hair is falling out again and I'm having it shaved today. Back to the scarves.

Cindy

pakb56
Posts: 141
Joined: Jan 2012

Like so many other things I have read, this is another bump on the road to recovery. I am typically not an overly self conscious person or overly concerned about my appearance. So I am hoping after the inital shock I will just jump over the bump and go with the "it is what it is" philosphy that I has become my mantra.

I really like the Halloween "boo". I have really have had some very creative suggestions of things to write or even TATTOO on my head. Laughter is so good! I did buy a wig and my son was laughing about my Boston Terrier puppy running through the house with hit. She tends to run off with items like socks, shoes, anything, and catching her is nearly impossible. One of the guys I work with suggested a tattoo that involved a finger.

My doctor says I should expect the hair loss about day 17. I have numerous articles of headwear waiting. I went to have my hair trimmed and the stylist said "oh honey you aren't here to have me shave you yet". I told her no in 2-3 weeks but to cut it very short. So, the top is about 2 inches and the back shorter. I consider it Phase I. My husband told me to just let it fall out....yeah, easy for him to say. I think pulling chunks out would be awful.

Take Care and Be Well,
Pat

imackie48
Posts: 86
Joined: Nov 2011

Pat, I too went through the hair loss, prepared for it cut my hair short, but on day 17 hair was everywhere, so I went and cut it to about 1/4 inch, then went in the shower and scrubbed whatever was left, I just couldn't bring myself to shave it. I'm fortunate that I don't work so I just wear the wig when I go to the store. It was very tramatic, but I keep saying it will grow back.
This board has helped me through my ups and downs and I have made some wonderful true sister friends here, being couped up in the house this board has given me an outlet. I check it everyday.

Take care Pat
Irene

Karenhopeful
Posts: 38
Joined: Jan 2012

I was terrified of how I would feel. Praise God, it was great! They gave me nausea meds, and benedryl first. The only indication of when the actual chemo started was a slight cool feeling. The benedryl let me relax and nap. It was a 5 hour session. No nausea, no pain, no uncomfortable anything that day. They told me to take my zofran 3 times a day for the first three days whether I felt nauseaous or not. I have only felt upset stomach related to constipation I think. The next day, I had a bright red, hot, itchy face. They had said to expect that on my cheeks, but it was my whole face. Gone on Saturday. Saturday I was very constipated, took Senecot, and was eventually able to have a BM. Today I was fine but will continue with the senecot. I am still worried about getting the joint pains with taxol. Last night I did have a minute of tingling in my toes and ankles - not sure if that is the taxol. But it was brief. I am getting carboplatin/taxol for 6 treatments, 5 hours each once a month. I have uterine cancer that has gone into my lungs. Too large for surgery, I am uncomfortable and out of breath most of the time. I'm retired, but too tired for even housework, I have to sit and rest in the middle of making my breakfast or after taking a shower. I'm not so worried about my hair -though I may be when it actually happens - I am worried about the chemo shrinking my tumors. Good luck on your first chemo, hopefully it will go as well as mine did!!!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Karen, glad you got through that first round. I remember the anticipation of that first infusion. Kind of like going through fire.

In retrospect, the constipation was the worst side effect. Boy, I have much respect for importance of healthy bowels!!

It's interesting how the loss of hair effects us. At first it was pretty disconcerting and the pain of my poor little hair follicles. Who would have thought one can have a painful head?

I HATED wearing a wig and the scarf thing was almost comical on me. One afternoon I headed into the unknown and an amazing thing happened..... I still think upon it in wonder. I decided to chuck the wig and bite the bullet and go out in public bald!! I ventured into the supermarket and was in the checkout when I heard a voice saying, "Hi Mary Ann." I did not recognize the woman at first. Then it came back - someone I worked with at my previous job about 8 years earlier!! How could she have recognized a BALD me when I did not recognize her? Well, I had not seen her before that day in public & not since. She recognized ME, not the bald head. She validated me and her positive vibes gave me confidence that "it is what it is and I'm not ashamed or embarrassed to be a cancer patient". It was like acknowledging the "elephant in the room". I then proceeded to go bald everywhere except when I cantored at Mass or sang in a formal concert. Didn't want to distract in the environment - but I did go to dinner, work, shopping, etc. and found that people were kind, not gawky, to me. Maybe it would makes us a kinder society if we could empathize with others difficulties. I had feedback that I was brave and for someone alluded that I was looking for pity - which I wasn't. I was just coping with hair loss in the most comfortable way me - without that itchy tight wig and those scarves that slipped off my head. Hair loss has been the smallest problem for me.

I wish you all smooth sailing. Many blessings and hugs to you all, Mary Ann

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Karen, glad you got through that first round. I remember the anticipation of that first infusion. Kind of like going through fire.

In retrospect, the constipation was the worst side effect. Boy, I have much respect for importance of healthy bowels!!

It's interesting how the loss of hair effects us. At first it was pretty disconcerting and the pain of my poor little hair follicles. Who would have thought one can have a painful head?

I HATED wearing a wig and the scarf thing was almost comical on me. One afternoon I headed into the unknown and an amazing thing happened..... I still think upon it in wonder. I decided to chuck the wig and bite the bullet and go out in public bald!! I ventured into the supermarket and was in the checkout when I heard a voice saying, "Hi Mary Ann." I did not recognize the woman at first. Then it came back - someone I worked with at my previous job about 8 years earlier!! How could she have recognized a BALD me when I did not recognize her? Well, I had not seen her before that day in public & not since. She recognized ME, not the bald head. She validated me and her positive vibes gave me confidence that "it is what it is and I'm not ashamed or embarrassed to be a cancer patient". It was like acknowledging the "elephant in the room". I then proceeded to go bald everywhere except when I cantored at Mass or sang in a formal concert. Didn't want to distract in the environment - but I did go to dinner, work, shopping, etc. and found that people were kind, not gawky, to me. Maybe it would make us a kinder society if we could empathize with others difficulties. I had feedback that I was brave and someone alluded that I was looking for pity - which I wasn't. I was just coping with hair loss in the most comfortable way for me - without that itchy tight wig and those scarves that slipped off my head. Hair loss has been the smallest problem for me.

I wish you all smooth sailing and that you do whatever you need to do to maneuver the challenges ahead. Many blessings and hugs to you all, Mary Ann

pakb56
Posts: 141
Joined: Jan 2012

Karen and Mary Ann....Thanks for responding. Hearing what others have to say about their journey is so wonderful and helpful and I truly appreciate it.

Take Care and Be Well,
Pat

JoAnnDK
Posts: 276
Joined: Jun 2011

Karen, hace you heard about CLEANING FOR PURPOSE?

http://www.cleaningforareason.org/

imackie48
Posts: 86
Joined: Nov 2011

Ro, I can't believe you didn't have the aches and pains after your chemo, is there anything you ate or did not to have those treaded side effects. After my first chemo, I couldn't even get out of bed, felt like I got hit by a truck. I am getting the combo Taxol/carbo too. Do you get steroids after your treatment. My second chemo was delayed by 2 weeks because of my extracted tooth that was abcessed.
Before I started treatment, I weighed 130, I'm down to 118, I have been trying to eat anything I see, to put some weight on for the next round.
Any suggestions.
Irene

JoAnnDK
Posts: 276
Joined: Jun 2011

I cannot believe that there is actually a side effect of chemo that I did NOT have! Amazing. No aches and pains but I did have every other bad side effect..... and then some.

JoAnnDK
Posts: 276
Joined: Jun 2011

I had chemo and lost my hair during the cooler/cold months here in a northern climate. There is no way I could go out without something on my head. A friend knit me a couple of cute warm caps and I had a warm wool hat with a brim. I wore these "out" but even at home I needed something to keep my head warm or else my entire body would have been cold. I wore terrycloth caps at home. I did find one kind of scarf (pre-tied) that was do-able for me (as I am a total klutz!).

I also should mention that in my chemo class, we were told to minimize the amount of time we spent in public since our immune systems were so compromised. So I really did not go out very much. I treated myself to a weekly visit to the library at a time when there were no children's activities planned and when the "population" was at its lowest. I got books out then sanitized them at home with Clorox wipes or alcohol.

JoAnn

pakb56
Posts: 141
Joined: Jan 2012

JoAnn...you talk about staying out of public to avoid catching something. Not that I wasn't careful before but, since I found out I had to have chemo, I have become anal about washing, wiping, cleaning. I have hand sanitizers in kitchen, bathroom, home office. I wipe the carts at the grocery store with sanitizing wipes I carry with me then use hand sanitizer. However, I didn't consider wiping my library books...add that to my list!

I am from the Detroit area and we have casinos which I enjoy going to. The last couple times I went, I scrubbed the machines down! I am going to take my last trip there tomorrow because there is no way I am going to expose myself to whatever is floating around there (not to mention the smoke).

I am pretty klutzy too....no way would I be able to use a scarf that was not pre-tied or formed!

Take Care and Be Well,
Pat

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