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Lets Talk Chemo
Here is a new thread for those of us going through Chemo.  This may help us to see how each other are fairing and give advice to each other on this journey. 

My first day of Chemo I  met an 80 yr old lady that looked amazing.  She had finished her Chemo and her cancer had gone into remission.  Her advice to me was to stay positive, stay away from negative people, rest as soon as you feel tired, drink ensure when you can't eat, and laugh as much as possible.  She also said if you start to feel the least bit sick to take an anti-nausea pill.   After seeing this woman at 80 have such a wonderful outlook, I took her advice.  If she can do it so can we.  Good Luck Girls, We Will Make It !!!!!!! 
483 Replies
Tanner
122 Posts
What a great idea Jen!
My first day of chemo, my best friend Debbie and my husband came with me. We had many laughs to keep things light. I shed a tear when the meds started flowing, I felt like this was going to change my world for the next 4 months and just not sure what to expect. While I was there a friend of mine showed up with a bag. In it was magazines, a gift card for a grocery store and ENSURE! for when I couldnt eat. (just thought that was funny that the lady told you to drink that.lol) I was felt sick (no vomiting) for about 4 days after. My biggest side effect was achey muscles in my back, chest, neck. Hot water bottle and tylenol were my best friends for days but by the 9th day after treatment I felt like me again.
Round two has been a little trickier. (this time my aunt and grama came with) The day of my treatment I went and had my head shaved because I woke to alot of hair on my pillow and it was coming out easy. I just went to a place I had never been and it turned out the hair dresser is a cancer survivor. She was empathetic and wonderful and told me her work scheduel if I needed to talk. Incredible. So bye bye hair. My biggest side effect this time was fatigue. I slept, alot. Now I am having trouble with my Picc line area. I have to decide whether to take it out and try the other arm or wait forever for a port. SO, all in all, it hasn't been as bad as I know it can be and I am grateful. Two down, 6 more to go. I love counting down. Next one is Thursday. One day at a time...

Tanner 
journeys
219 Posts
I asked my nurse about the triple pack for anti-nausea for round 2 and she looked at me like I had grown two heads. Jen was it you who mentioned it? I guess I need to know the specific names of the drugs. I live in the GTA and you mentioned it was partially covered.  Anyway, she had no idea what I was talking about, and went away to check. When she came back, she told me it wasn't even for nausea treatment of cancer (what?) and practically scoffed at me for asking.

If I was to keep a diary of all the stupid, inappropriate things people and medical staff say when you're going through something like this, I don't know whether at the end of it i'd laugh or cry. Hopefully the former.

I went in armed with some questions about meds so I could be sure there woudn't be a repeat of the last time, when I was really sick. After listening to me (more like continually interrupting), she told me 'you're getting anxious'. Gee, ya think?

Why can't a person do their own research, ask their  own questions and be their own advocate without obviously annoying medical staff? Some drs/nurses encourage asking questions, some just get, I don't know... offended? Irritated? Bored because you're one more cancer patient asking the same old questions all the time? Maybe she was having a bad day. But she pissed me off!

I will be taking FeC-T chemotherapy and apparently one of the anti-nausea meds can't be switched but the other one can. So I'll have to wait to talk to my oncologist the day before the next treatment. Maybe I'll have better luck with her. Round two is June 6th so I still have some time to sort this out. I know there are no guarantees that it won't make me sick again but I have to try at least!

Sarah_Admin
44 Posts

Hello journeys - guess what? We DO have a thread going on in our 'Laughter is the Best Medicine' group asking, "What is the dumbest thing anyone has ever said to you?" Its a great place to share those awkward, silly, frustrating, and ridiculous things people say when they're trying to be helpful/efficient/comforting etc. We hope you can read some of the previous posts and even have a giggle or two - there are some real doozies!
Remember, you have to click 'join this group' on the right hand side if you want to post.
Sarah
P.S. Sorry you had such a negative experience at the hospital. Hope you find out the answers you are looking for soon.

 

Jen
43 Posts
The medication is called Emend Tri-Pack Aprepitant 125&80 MG Oral , you take day 1 pill 1hour before chemo then you take day 2 pill the next morning then day 3 the following morning.  It is a realtively new medication, it was recommended by my head oncologist (I have 3) from the RS McLaughlin Durham Regional Cancer Centre.  I also take ondansetron and dexamethosone.

I found I had to be assertive when discussing my treatment.  They are accustomed to the elderly that just do as they are told.  We have a right to know our options and to have our questions answered; they will have to get use to it :) 

Good luck,
Jennifer
journeys
219 Posts
I read that thread and it did make me laugh! I will add mine too. (though one I can think of is just plain mean - it's not a funny one!)

journeys
219 Posts
Thanks Jen! I will ask today. I also take ondansentrone and apparently that's the one I can't switch.

You're right; they better get used to it because I am going to be asking questions and doing research the whole way!!

Take care,
Lauren
Tanner
122 Posts
Jen,
It sounds like you and are on the same regimen, and are at the same cancer centre! Small world. However, I get my treatment at the Cobourg Hospital but my radiation will be in Oshawa and they are my homebase, if you will. My chemo is A/C for 4 rounds and another med for the last four. I hope we can have smoothe sailing through these.
And best of luck Lauren. Do not be discouraged, keep asking, keep talking. Someone will get it right!

Tanner
barbara
8 Posts
I have just completed 6 months of "aggressive chemotherapy". I had a wheelbarrow full of anti-nausea medication and although I experienced a lot of side affects, nausea and queasiness were not on the list. The meds worked quite well for me.
 
journeys
219 Posts
After messages left yesterday by me, my sister's sister in law (who is oncologist nurse in States) and the oncologist pharmacist, my oncol nurse finally said my oncologist would be willing to call in the Aprepitant pack. Now I'm fighting to get ondansetron switched to palonosetron, and to get dexamethasone to go home with!

My home pharmacist (a dear) said he could probably get everything in one day and he'll tell me once order is faxed in, what is covered and what's not.

This was all done through help of people on these message boards, research from my nurse friend, and myself! So it's a good lesson for me and everyone out there to do what you have to, to get the best you can for yourself!

There's no guarantees, but at least it's a better chance than what my nurse initially said: 'Just take gravol.'

Lauren

P.S. Can anyone tell me how to just post on a thread, rather than do 'reply'? I still haven't figured it out!
journeys
219 Posts
By the way, thank you people for your information and support in this area! Much appreciated!
journeys
219 Posts
Thx...I see sometimes an 'add comment' and sometimes not. But that's ok, I'm getting the hang of it :-)

thanks,
L
Jen
43 Posts
Oh the fun of Chemo,

Last night was my first expereince of pain.  I started getting extreme stomach pain, my poor husband.  Anyway, one of the side effects to one of my meds says to get immediate medical attention.  So off to the hospital, we have a wonderful one nearby, they did blood work and gave me a needle to ease the pain.  The blook work came back fine, the doctor explained the stomach lining consists of those fast splitting cells and the chemo is killing them. 

I had eaten avacodo, and the fat in it seems to have caused the problem, as I am fine today.  I guess not all healthy food is going to be good for me. 

Has anyone had problems with certain foods, I will try to bypass them....

LoriK
71 Posts
Tomatoes and onions seem to be my nemesis in the 5 days following chemo. After that, I can have them in moderation. Haven't had avocado issues, but good to know that is a possibility.
journeys
219 Posts
Had my second chemo round with the new anti nausea drugs and they worked! No Nausea, no throwing up, just some sore tummy and tiredness. I'm now six days past chemo and I'm feeling sorry for myself because I'm so exhausted. Have no energy.

Before diagnosis, I was working on some projects at home that would lead to adding financially to our home. In some ways, I'm lucky because I can put it all on hold until chemo and radiation are over, but in other ways, it's not fun because it's isolating. I don't have to go anywhere and when I'm so tired, I'm home all day.

I did some stretches and toning exercices with the intention of going for a walk today, but I ended up being too tired. Is anyone else fighting exhaustion during the treatments? I hope it doesn't get progressively worse with each round! This sucks!

Lauren
Jen
43 Posts
Hi Lauren , I had my second treatment on Thursday June 7th and I'm also exhausted. I'm feeling a little better today I was able to go for my walk (slowly). The last two days I couldn't get off my bottom. Hopefully tomorrow we'll feel better. I did drink an ensure today to see if the boost helps. Hope your feeling better soon ;) Jennifer
journeys
219 Posts
Hi Jen. The days since I last posted have been much better. I hope for you too. I've had normal energy a lot of the time and then sometimes I crash for a while but it always returns to normal. So that's good!

I"ve been doing stretching, toning excercises and some walking. I don't think I have the energy for aerobics yet! I used to do aerobics from DVDs but I don't think I'm there yet.

Are you having chemo every three weeks like me? I think that's what you said!

Lauren
Jen
43 Posts
Hi Lauren,

Glad to hear your energy level is back, mine too.  Yes, my Chemo is every three weeks.  I go to Peterborough for it and then I will go to Oshawa for my radiation in the fall (probably - Oct).  The Cancer Society has arrangements with a hotel in Oshawa for radiation patients, I may stay there as I will be having 25 treatments over a 5 week period and we live over an hour away. 

As for exercise. I went golfing with my hubby on the weekend, and played the entire 18 holes (we had a cart to minimize the walking).  I canèt beleive how good I feel this time around, hope the next one is the same.

Have a great week :)

Tanner
122 Posts
Hello ladies,

I haven't been around for a while. I will be having my 5th treatment Friday and each one has gotten a little tougher than the next. I have them every 2 weeks so I don't have many "good days" in between. Also one of my side effects has been watery, irritated eyes (anyone else?) so I cant be on the computer for too long. Everything that could go wrong, has.lol. bloodclot on my picc line, requires a needle every day until im done, also bacteria found there so I am on an antibiotic that is sooo hard on my stomach. So, hasnt been a picnic, thats for sure. I am finding it harder and harder to stay bright. I cry ALOT. But I don't feel bad for it. I feel bad that my husband and daughter have to see me like that, but I have to let it out. Im not going to pretend that Im ok with feeling this way (tired, sick, cant see proper, weak, nothing tastes right...etc.) No one likes it, it sucks. There is where I am at and I will try to get on here again very soon. I think about all of you often and hope that no one is going through anything as bad as this. Good luck everyone!!!

Tanya
LoriK
71 Posts
Hi Tanya. I've also been having issues with my eyes, thought it was allergies, then thought it was part of a nasty sinus cold I had, then confirmed with my oncologist it was a side effect. Annoying, as I've returned to work and am at a computer all day.

Let it out as much as you need to in a safe place, whether that's here or elsewhere. I saw a counsellor the hour before today's treatment and cried most of the time, barely even spoke the first 15 minutes. Sometimes it just needs to be done. 

Trying to be positive though, as today was my last AC treatment which means I'm halfway there - woohoo! On to my four taxol treatments and then I'm done chemo, baby! 
Jen
43 Posts
Hi Tanya,

Sorry to hear things are not going well.  I too have had issues with my eyes watering.  The paper work I was given mentioned using NATURAL TEARS, it is working, my eyes are improving a lot.  I had my third treatment yesterday and mentioned the eyes to my oncologist and she asked what I was using when I told her about the Natural Tears she said that is what she recommends.

Hope this helps, and your not the only one crying, my poor family have taken a lot.

My thoughts and prayers go out for you.  Take Care, Jennifer
Tanner
122 Posts
YAY Lorik,
Looks like we are neck and neck to getting this done. I had my 5th treatment yesterday, a new concocktion too. My oncologist says I should have a very different experience with these next four. The A/C, as I mentioned before, was brutal. So, heres hoping! I do have those positive days and EVERYDAY, regardless of how I'm feeling, I am grateful for so much!
Cheers to being half way done. I'm right there with ya girl!

Tanya
Tanner
122 Posts
Thank you Jenn, for sharing that I'm not alone in my tears. Gosh, Ive never cried so much but Im hoping for a bit easier ride with this round so heres hoping.lol.
I will try those natural tears for this lousy side affect though, so thanks for that advice as well. Any relief would be great.
Your thoughts and prayers are very appreciated. Im even so grateful that you started this chemo discussion. I hope things go smoothly with your treatments. You sound like a smart woman who does her homework so keep it up! best wishes for you,
Tanya
LoriK
71 Posts
Cheers, Tanya - back at ya!
daisygirl
26 Posts
Hello, I am new to this site.
I have finished 8 treatments of A/C ( 3 weeks ago) and in my experience the first four were down right brutal and fatiguing and the last 4 were much more easier and my energy was down for a few days but no where near what it was during those first 4 of Andrimycin. The taxol did leave me with a sore and sensitive tongue but that is easing up now and my hair is certainly coming back in! I had  shooting type pain from the waist and down my legs for the first treatment but then found that the next round was much less bothersome. I just kept imagining that the drug was attacking all of the nerve cells and giving me fresh new cells! Have faith and know that there are better days ahead!! I almost feel "normal" today.
Tanner
122 Posts
Hi Daisygirl,,

Thank you so much for "the light at the end of the tunnel" lol. I have had my first round of Taxol, three to go. The aches and pains were from my Jaw to my toes but only lasted a few days. Tired, absolutely, and weak. Did you have any problems with your eyes? I have tried the Natural Tears, but it is more a blurriness. I will talk to my oncologist about this Wednesday, but thought you might have gone through this. Again, thank you for the insight. Any little encouragement helps. " Normal" is going to feel fantastic! lol.

Tanner
Tanner
122 Posts
Oh, anyone having trouble falling asleep, staying asleep? Gosh, and appetite. Nothing tastes normal and I really don't get that hungry feeling anymore. I have to make myself eat. Ive lost 12 lbs which isn't too bad I don't think. Just wondering.

Tanner
LoriK
71 Posts
I'm definitely having issues with eating. I've had meals where nothing on my plate felt or tasted normal. After surgery but before treatment started, I was eating awesome - tons of veggies, no evil white foods, etc. But as the A/C treatments progressed, my tastebuds and stomach have not wanted anything to do with healthy eating (if I've wanted to eat at all). Fruit smoothies help, but I'm eating the less healthy stuff in moderation just to get food into my body. I've lost weight, but to be honest, I needed to lose 15-20 lbs anyway. 

Have heard from a few women that the appetite returned while on taxol, so I guess I'll wait and see. Here's hoping you get some enjoyment and nourishment from food soon, Tanner.
barbara
8 Posts
Evil white food. ha, ha, good description. Turns out that's what I was reduced to for a couple of months. Cheerios, yogurt and tofu. Oddly, I could still eat sushi (no raw fish and lay off the wasabi). Also, try a light chicken boulion with tofu chunks. Sort-of nutritious and better tasting than backing soda rinses for mouth sores.  If you're  diabetic, drink Glucerna instead of Ensure.
daisygirl
26 Posts
Good morning! I had eye problems from one end of the spectrum to the other. I had watery eyes while on the first 4 treatements then to drier eyes during the last four. I just used artificial tears ~ and I was able to wear my contacts, altho' not as long as usual. It will go away, my eyes are back to normal after the last chemo.
My only complaint is that my  fingers still fall asleep from the Taxol. Thumb, index finger and middle finger on both hands, altho worst on the left side on which I had my surgery. I can live with that.
I am sure that there are other remedies for dry eyes. I would ask for something better.
Have to go for now.Off to radiation. I started yesterday.
daisygirl
26 Posts
I used club soda for mouth sores, works wonders and has no taste!! I had a "thick" mucous feeling in my mouth for days after chemo and this helped to cut that as well.
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