Terrified of Chemo - Please help

Been There, Done That
Hi Debbie, and welcome to the club that no one wants to join. Everyone here will have a different experience but I am happy to let you know how it went for me.

I was diagnosed with triple negative breast cancer in 12/2009 after a bunch of diagnostic procedures including an axillary dissection. I had a right mastectomy in 2/2010, got my port put in and then had chemo. I had 4 rounds of A/C (Adriamycin/Cytoxan) and 12 rounds of Taxotere. I did well with the A/C and the side effects were manageable - primarily fatigue. I never got the dreaded mouth sores. I began to lose my hair on precisely Day 14 after my first chemo infusion. The Taxotere rounds were much more difficult. I was not nauseous but oddly enough I vomited 2-3 times a day. I also had diarrhea. Some people have the opposite problem if you catch my drift. I had watery eyes that continue to this very day almost 2 years later - that is out of the ordinary according to both my oncologist and a highly specialized opthamologist. I also eventually lost 8 of 10 fingernails and 2 of my toenails. They have all grown back just fine. For a while I also lost my desire to eat and sense of taste. Everything seemed to taste like paste. There is something to be said for being overweight to start with. I lost 40 pounds. I have, unfortunately, gained all of it back.

There are medications that you can be given for many of the chemo side effects. At various times I took an anti-diarrheal and definitely took the anti-nausea drugs Zofran, Compazine and Ativan. I got thrush in my mouth and had to use Nystatin briefly. There are even drugs that can help with neuropathy (one problem I did NOT have). There is no need to suffer unnecessarily. Tell your doctor what is going on and ask for help. You CAN do this.

It is now almost 2 years since my last chemo. I have had 2 reconstruction surgeries. I saw my daughter graduate from high school and complete her second year of college. I will see my son graduate from college next year. My 25th wedding anniversary is in November and I will be around for that. Anything I went through for the 6 months I was in treatment was absolutely worth it. We are all afraid when this unfortunate journey begins. If you educate yourself and know what to expect and come here for support it will be easier to handle. Knowledge is Power.

Post again when you have more information AND questions. We will be here.

IRENE

Gabe N Abby Mom said:

Hi Debbie,
I'm sorry you
Hi Debbie,

I'm sorry you have to be here too. But you'll find this in an incredibly supportive group, and that you can discuss anything here.

I had 6 rounds of TAC (taxotere, adriamycin, cytoxan) once every 3 weeks, this was in 2010. Aug of 2011 I was dx'd with mets to the lymph nodes between my lungs. We tried xeloda and I'm now on weekly abraxane.

In my experience, the most important thing you can do is to stay well hydrated. It truly helps me to better tolerate the chemo, along with helping to flush the poison out of my body. I liked vitamin water for the taste and icy cold smart water for the electrolytes.

The other really important thing is to let your doc/advice nurse know about your side effects. There are many meds to help you deal with whatever is going on. Also let us know, there is lots of experience on this board...if you ask we'll share what helped us get through the chemo. And you can search previous posts for tips.

I also recommend that you ask your doc for ativan...it's an anti-anxiety med. I took one the night before the first chemo and it allowed me to sleep. I also took one the morning of the first chemo, but if you do that you'll want a driver. (I recommend a driver anyway, because you don't know how you'll feel after the first one.) Ativan can also help with nausea.

Eat whenever and whatever you want, your body will need protein and calories to help recover from the chemo. I liked bland foods...plain noodles, potatoes, scrambled eggs, rice, etc.

My treatments were on Thursdays, and I usually felt pretty rotten till Monday. Then I would gradually get better and better. You'll probably find there is a cycle and routine to how you feel.

I hope all this helps. Please come back and let us know how you're doing.

Hugs,

Linda

Oh, Debbie, I'm so sorry you have to be here
and that you're so afraid. I know that fear and I can tell you from first experience, it was not nearly as difficult for me as I thought it might be. Now, I know everyone is different and everyone has a different story to tell, but here's mine.

I was diagnosed with Stage 3C invasive ductal ca. with 10 positive lymph nodes. My onc. said she was going to be very aggressive with chemo, so I also (like Linda above) had 6 rounds of the TAC every 3 weeks. On day 14 after my very first treatment my hair started to come out, so my hubby and I had a happy hour party in the backyard and shaved my head. No big deal to me--like you, it was the least of my concerns. I have to say, the first 3 treatments went great--I got the Neulasta shot the day after each chemo (to help rebuild white cells) and I had some diarrhea/constipation combo for the first couple of days and then body aches and pains (flu-like) from the Neulasta. The onc. had a remedy for all that and it went very well. I never once vomited, though.

The 4th treatment is a little tougher--just felt very flu-y for a few days. Five and six were a little tougher as well, and it took a little longer to recoup.

I have to say, my most annoying side effect was that after about treatment #3 all food tasted pretty yucky. I pretty much ate to get my nutrients, but it was all trial and error as to what tasted tolerable. I love my food, so this was really annoying to me!

Staying hydrated is essential as is resting whenever you can. Don't overdo and take all the help that is offered to you.

Debbie, I know you're scared, but if you have a higher power in your life--you're going to get all the help you need to get through this and you will.

As others have said--it's not fun, but it's certainly doable.

Please keep posting and let us know how you're doing.

Hugs, Renee

missrenee said:

Oh, Debbie, I'm so sorry you have to be here
and that you're so afraid. I know that fear and I can tell you from first experience, it was not nearly as difficult for me as I thought it might be. Now, I know everyone is different and everyone has a different story to tell, but here's mine.

I was diagnosed with Stage 3C invasive ductal ca. with 10 positive lymph nodes. My onc. said she was going to be very aggressive with chemo, so I also (like Linda above) had 6 rounds of the TAC every 3 weeks. On day 14 after my very first treatment my hair started to come out, so my hubby and I had a happy hour party in the backyard and shaved my head. No big deal to me--like you, it was the least of my concerns. I have to say, the first 3 treatments went great--I got the Neulasta shot the day after each chemo (to help rebuild white cells) and I had some diarrhea/constipation combo for the first couple of days and then body aches and pains (flu-like) from the Neulasta. The onc. had a remedy for all that and it went very well. I never once vomited, though.

The 4th treatment is a little tougher--just felt very flu-y for a few days. Five and six were a little tougher as well, and it took a little longer to recoup.

I have to say, my most annoying side effect was that after about treatment #3 all food tasted pretty yucky. I pretty much ate to get my nutrients, but it was all trial and error as to what tasted tolerable. I love my food, so this was really annoying to me!

Staying hydrated is essential as is resting whenever you can. Don't overdo and take all the help that is offered to you.

Debbie, I know you're scared, but if you have a higher power in your life--you're going to get all the help you need to get through this and you will.

As others have said--it's not fun, but it's certainly doable.

Please keep posting and let us know how you're doing.

Hugs, Renee

I remember the fear
I remember the fear before my first treatment too. I was diagnosed in Jan 2010 with stage 1 grade 1 invasive ductual carcinoma. I had a lumpectomy in March 2010 and then did 4 rounds of cytoxan and taxotere and 30 rads. My onc wanted to treat it this way because he said I was so young ) I was 49. I did handle the chemo well, I felt the worst on Sunday after my trt on Fridays. I would feel really tired for a few day but was never nauseas, as someone said I would have ocassional diahrea and then the opposite. My hair started really falling out day 13 after first treatment. I choose to have my head shaved then. I always say one bonus was not having to shave my legs or underarms that summer! My last trt was July 2nd 2010. It is different for all of us but as we say it is doable. I am sorry for your need to be here but it is a great place to be for support and info. You will find great people here. Please remember to tell your Dr and nurses about side effects because so many can be treated. I took an anti anxiety drug before trt too and it did help a lot! Drink lots and lots of water before during and after the trts and please ask anything. Someone hear pretty much always has an answer for you. Prayers and God Bless
(((hugs))) Janice

Lots of hugs!
I cannot add more than these wonderful ladies have. I do want to tell you that it is doable, I have survived 28 rounds of chemo and am currently in remission. Yes it is scary but doable and it is your path back to good health. With each treatment you are taking steps to take back your health and to kill the cancer. We will be here for you so don't hesitate to pop on and share your fears, joys and milestones. I wish you all the best!

RE

It's normal to be terrified
My drug cocktail was a little different than some....first epirubicin and cytoxan 3 weeks apart for 4 treatments then taxol every 3 weeks x 4. The first treatment I was so scared my blood pressure was through the roof, I am surprised they treated me, and that was with Xanax (anti-anxiety) and blood pressure meds on board. By the time I got home it was fine and I didn't have any more trouble after that


I did have some nausea and made sure to take my antinausea meds, had some constipation so used over the counter stool softeners and ate dried fruit.

The Taxol gave me bone pain so I took Benadryl for that, the ladies here can tell you what they took as it was different, Claritin I think.

It was no where near as bad as I thought it would be.

Wishing you luck,

Jennifer

VickiSam said:

It was 'NO' picnic in the park for me..... However,
I endured 18 consecutive weeks, yes -- no breaks for Taxol/Taxotere - Carboplatin and
me. My side efforts were off the 'Bell Standard charts'.. Go figure! It was only
after my 3rd ER visit did my Oncologist sit up and take notice of all that I said.

I kept a journal of symptoms, which included head aches, fevers, bouts of nausea --
fatigue, watery eyes ... etc, and presented this list to my Oncologist, or his Onco
RN each and every time I went in for chemo therapy infusion.

ALWAYS .. alert your Onco RN of any unusual feelings etc .. Ask your Oncologist for a
list of possible side efforts, which should be presented to you before your first chemo infusion. Often these list will not be given, as most Oncologist would rather pull
out their eye, than give us Chemo Queens a list of possible side efforts -- chances
are .. most of us would run out of their offices, and never return.

A few personal tips that helped me make it to that chemo finish line. (it is NOT easy,
but, it is doable.) Honestly, only the grace of God, and the support of this
site helped me make it thru many a dark days -- and nights.

=====================


It is so important to remain and continue hydration, water - water, and more water. Splash in a little lemonade, cranberry juice -- or prepackaged crystal light, or Lipton Tea. Herbal Tea's also work for a change of pace.

If you are getting the neulasta shot -- Please ask your Oncologist about taking a benadryl -- or claritin -- which many of us === swear by -- as they help alleviate that 'just run over by a truck' aches and pains - some of us experience from the neulasta shot.

Ask for prescriptions for nausea and vomiting -- as well as diarrhea.

Plastic silverware is a must ---
biotin toothpaste and mouthwash is a daily essential
(available at most Target's or Wall-Mart's)

Food is subjective -- depending on your personal needs and taste buds .. What taste good or was tolerable 1 week -- changed for me, the very next. I could not tolerate any foods with sugar, i.e. ketchup, or cola's.

To help prevent mouth sores -- suck on ice chips during all chemo treatments.

Rest when you can, as some chemo queens have bouts of insomnia ---

Take goodies to entertain yourself during your infusions -- games, books, friend, a snack, IPOD, laptop ...

Strength, Courage and Hope.

Vicki Sam

Lots of excellent advice
Lots of excellent advice here from other Pinks! And we welcome you! You have probably realized that chemo affects different people in different ways. Good hydration is one of the important keys to feeling better through it.

I've chosen to try to look forward to chemo (gotta do it) and visualize the stuff dripping in going after those nasty cancer cells and gobbling them up like the old Pac Man games.

I was diagnosed the end of the year and have been on chemo since Jan. I had Adriamycin/Cytoxan every other week for 8 weeks. I got Neulasta the day after to keep white cell counts up and Emend the day of and 2 days after to prevent nausea. Then I started 12 weeks of weekly Taxol. Just one more to go!! In both cases there is a cumulative effect and in my case that has been fatigue and aches. After I finished the A/C and started Taxol, I felt fine for about the first 6 treatments then the fatigue started one day a week, then 2, etc. But completely bearable. I did have problems with my contacts with the Taxol, but moisturizing drops help. For me, appetite has not been a problem. Everything tastes great! Bring it on! Something I never expected!! I now weight 15 lbs more than I EVER have. NOT a good thing--Go figure--

Good luck to you and remember to call your doc if you have any problems. They have so many things available to help. You don't need to wait for an appointment!

Angie

You'll make it...
Just dittoing all the great advice. You will have our prayers with you and God will carry you when you feel too weak or tired. My sister used to remind me how quickly the time seemed to fly when I was pregnant with my children, and so we tried to think ahead 6-9 months and focus on the future instead of the today! Keep in touch here, these ladies are the best!

camul said:

glad u r here
Because this group of pinks r the best! like everyone says, the anticipation is worse than the Actual infusion. There is no way around the fact that chemo sucks, but I keep reminding myself that this is what has kept me alive and is doing so again. I was 44 with IDC stage 1 , er & pr. + her2 -. Only had 3 of 8 orig treatments due to an alergic reation. Was on tamoxifen for abou 6 months, taken off because of toxiciy to my system but say onco 2 x a year. with annual mamograms, pet and bone scans.

Now I am on my 3rd new chemo this round. It sucks this time around but the anti nausea meds are so much better thn even 10 years ago.

The hardest infusion of all was the very first one, only because of the anticipation. I know the chemo gave me 8 1/2 years cancer free and so far has given me 19 months now and with each treatment that I don't want, I just keep.reminding myself of all the things chemo has let.me.be here for.

Keep hydrated, have foods handy like yogurt, soups, popcicles, they were easiest when I did get some mouh sores. Use mouthwash with out alcohol. Have natural stool softeners on hand incase and eat natural fiber lime oatmeal, and drink water, water, and more water:)).

Lastly, wash your hands a lot, I use clorox wipes especially when I go in public restrooms. Most importantly, learn how to lisen to your body, when 7 r tired, sleep. When u know something does not feel right, go wih your gut feeling and call your doctor. Dont believe that the statistics you read on line are just that statistics, and we r not statistics we are individuals. Remember too that 20 of us may have the same treatment plan and each of us will have our own experience.along wih different se.

I wish you the best! Prayers,
Carol

bumping up ...
darn spammers!

missrenee said:

Oh, Debbie, I'm so sorry you have to be here
and that you're so afraid. I know that fear and I can tell you from first experience, it was not nearly as difficult for me as I thought it might be. Now, I know everyone is different and everyone has a different story to tell, but here's mine.

I was diagnosed with Stage 3C invasive ductal ca. with 10 positive lymph nodes. My onc. said she was going to be very aggressive with chemo, so I also (like Linda above) had 6 rounds of the TAC every 3 weeks. On day 14 after my very first treatment my hair started to come out, so my hubby and I had a happy hour party in the backyard and shaved my head. No big deal to me--like you, it was the least of my concerns. I have to say, the first 3 treatments went great--I got the Neulasta shot the day after each chemo (to help rebuild white cells) and I had some diarrhea/constipation combo for the first couple of days and then body aches and pains (flu-like) from the Neulasta. The onc. had a remedy for all that and it went very well. I never once vomited, though.

The 4th treatment is a little tougher--just felt very flu-y for a few days. Five and six were a little tougher as well, and it took a little longer to recoup.

I have to say, my most annoying side effect was that after about treatment #3 all food tasted pretty yucky. I pretty much ate to get my nutrients, but it was all trial and error as to what tasted tolerable. I love my food, so this was really annoying to me!

Staying hydrated is essential as is resting whenever you can. Don't overdo and take all the help that is offered to you.

Debbie, I know you're scared, but if you have a higher power in your life--you're going to get all the help you need to get through this and you will.

As others have said--it's not fun, but it's certainly doable.

Please keep posting and let us know how you're doing.

Hugs, Renee

Debbie, I was lucky that I
Debbie, I was lucky that I didn't have to take chemo, but, many here have and it looks like they have given you some really good advice.

I want to wish you good luck and pray that you will have no side effects.


Hugs, Noel

Cnunley said:

Terrified of chemo
I am terrified as well of chemo . I was diagnosed with breast cancer April 27th. The tests and the appointments with more doctors as well as reading up on everything and trying to make a decision is feeling just too much. I am now thinking that I do not want to do the chemo at all. I'm not trying to dissuade anyone from their treatment I'm just so anxiety filled I just don't think I can do it. Worst place I can think of to be at this point.

Cnunley
I said exactly the same thing as you. It IS terribly confusing to have to learn everything and make decisions right when you are at your worst. I know you don't want to do the chemo...I actually was making plans to sell everything and move out of state and let the cancer have its due. The anxiety you feel may be helped with a prescription of Ativan, which helped me. Please call your doctor and explain that you are so anxious it is affecting your life, and ask for a prescription! And secondly, the loving support of a couple of dog-eared friends who would not let me do the above, but prayed for me and talked with me daily helped me to have the peace I needed to do it. You can too. We can face a lot with the loving arms of concerned people around us. Do you have this kind of friend?

I have just finished my second chemo. I hate it! But it will kill the evil thing that has come to live in your body, and mine. You have come to the right place with sisters that can give you advise and love. Stay here daily, and continue to post and we will pray you through it, ok?