Just joined...dealing with horrible side effects

bethsbaby said:

Chemo

hi Terri,  I am sorry you are having such a difficult time.  DO NOT feel like a wimp !  Your dr is right, everyone is different and their body's reaction to chemo is as unique as everyone's cancer.  Keep in close contact with your oncologist about your side effects.  For mouth sores, they make a mouthwash that you can swish and swallow.  Although food tastes weird,  keep experimenting , even things you never liked before may taste ok.  I found some things that I tolerated well.  Watermelon was one of those things.  See if they can give you meds for the other problems.  Hang in there !  One other suggestion is even though you feel fatigued,  try and get some exercise.  If there is someone who can walk with you try walking,  or even rocking in a rocking chair.  Some days I was able to walk around the block, but there were some that I could only walk inside my house.  Keep moving!  The more you lay around the worse you will feel, but make sure you don't over do it .  When you feel good you will want to do more,  pace yourself and stop before you get too tired.  It takes days to get over once you have done too much.   I hope your chemo session goes smoothly today, and hope that your side effects will get better.  Stay on top of your symptoms and call your dr everytime you are having trouble.  Right now you have to be your own advocate.   I'm praying for you to have some relief and healing.   Keep mowing and smile even if you feel like crying ( but it it ok to cry when you need to).    "Bethsbaby".  Aka Lynne.  4 years post chemo

I remember how difficult it was for me to eat part of the time.  Everything was awful - except ice cream or smoothies.  I think the coldness was soothing. Drank the smoothies through a straw.  That helped.  But I had a difficult time eating for many days with each cycle.   It would get better just in time to be hit again.   Lack of appetite is difficult to describe to anyone because the answer is always to just make yourself eat.  I did a pretty good job of that in spite of food tasting awful and having no appetite.  I did, however, lose weight, but only about 15 lbs. over the course of 3 months - that's not a lot.  Your doc is right, everyone responds differently and I absolutely hate it when someone who hasn't had chemo informs you that they just saw so and so and she was just out riding her horse or running a marathon and is doing great (and implying that you must be a whimp).   So and so was probably at a good point in her infusion cycle.   I had a comparatively easy time with chemo - only 4 sessions of taxotere and cytoxin, but I can tell you this, I never want to do it again, and that fourth time was particularly hard.  It is cumulative.  You're having 6 infusions PLUS Herceptin and Perjeta.  Well, that's a lot!  I didn't know anyone who had a particularly difficult time on Herceptin and Perjeta but now I can tell you that one of my best friends is having a horrible time on ONLY Herceptin and Perjeta and had to dc the Perjeta.  So = give yourself a break.  Chemo is difficult for everyone - it is just more difficult for some and you're getting a lot of stuff!  Come here and whine all you want.  Each day that passes is a day closer to the end of treatment.  Countdown.  Rest and take really good care of yourself.  Exercise when you can.  There were days I could not walk to the corner to get the mail.  Your onc can prescribe something if OTC immodium doesn't control the diarrhea.  Just be sure to let her/him know about your side effects.  They have a plethora of things that may help, including the IVs to help with dehydration.  Be sure to let them help you get through this as much as possible.  And be sure to let them know about side effects because they can be very serious (which is why lab work is done prior to chemo and why sometimes a session is postponed).

Suzanne

I'm so sorry you are going thru all this. I remember thinking the exact same things. I was lying on the couch all day and hardly making it to the bathroom some days, sick all day long. I would wonder how these amazing people go through chemo while working and running marathons! I see now that I wasn't thinking straight. Everyone has a different cancer and I think a lot of the stories are about people with milder cases. Maybe they are running marathons because they just did surgery and then rads. Or they had an easier treatment. So don't compare yourself with others. Do things that can help you NOW such as:

Doing your best to eat the foods you should be eating whether they taste good or not plus drinking the water you need to prevent dehydration (which is terrible)

Letting the house work go, so you can spend some time with your husband and kids.

Avoiding negative people.

Asking your onc and using simple medicines to handle side effects such as mouth sores, dry skin, nausea, hemorroids etc. It makes a huge difference to do something to help each symptom.

Getting out every day to walk a bit and get just a little sunshine.

Make a promise to yourself that, when you are better, you will help others get through this difficult time.

Keep us posted with how you are doing, you can dump on us here as much as you like, Hugs, Anna

Goodness you have been through a lot.  Yes the baking soda and water mix, ask your cancer nurse what the ratio was foe mixing this up.  Really did keep the mouth ulcers down.  Most of what I read is the norm not the exception.  That fatigue is totally common for most, at times I could not move.  But when you feel you can start to get going start a bit at a time, like the other lady mentioned.  It was an effort just to look at the ironing.........  Seriously.

Please note those flavored Popsicles are great for sucking on, the fruit flavor giving you a cool zing and are made of water of course so you get some liquid.  (I hate water)  Greek yogurt and normal yogurt are very soothing, and again as mentioned, smoothies work very well.  Suck on ice.  

I have to to say I did quite well on the chemo but didn't have any additional problems like you did with the port.  I had four in total.  If I had to do more I would not have coped so well I am certain.  So, in my opinion you are doing brilliantly and you should know that.

Soon on you should start to feel better.  Surround yourself with positive people, take each day as it comes, if you want a good cry so what, scream you want.  Walk a little, cycle a little, garden a little etc.  I went back to yoga, even managed to get an exercise cap for the gym from Headcovers.com.  

Hope you get no further problems and get that chemo done with.  

Welcome to the club no one wants to join. The ladies have all given you excellent suggestions. Tomorrow was th e day I started chemo 1 year ago, I can .hardly believe what the last year was like, and how good I'm finally feeling. It DOES finally get better.

It takes a big attitude adjustment, that some things just aren't going to be what you want right now. My fatigue was something I couldn't argue with, definitely had to prioritize what I could accomplish, and much of the time what I could accomplish was laying in my recliner with my laptop, and taking 2 naps a day. Lew would come home over his noon hour and help me take a walk across the street and back, while leaning on him on one side and my cane on the other. We even picked up a donated walker to use for the last chemo session but didn't need to use it because onc cut back on my chemo dose. I love to garden, and was so short of breath I couldn't even bend over to deadhead my flowers. God watered my flowers for me and they survived, and this summer I'm enjoying my yard again.

As for food, I had one round of mouth sores with a yeast infection. After I started using the baking soda/salt mouth rinse several times a day no more sores. I didn't have problems with nausea but nothing tasted right. I too lived on watermelon, I'd almost eat them faster then Lew could go buy them. Also the milk shakes, we bought one of those hand blenders. My dietician wanted me to get extra protein (like 70 gm a day) to help my body with the repair work my body was doing with chemo, so I'd put a scoop of protein powder into my shakes (a brand without soy because my cancer was estrogen positive and my onc didn't want me having soy every day). I also made some homemade popsicles with blended blueberries and strawberries in them, or mango popsicles, which tasted better than plain water.

As for the weakness, once I was finished with my taxotere/cytoxin sessions Lew and I started going to the free Livestrong sessions at my Y. They were awesome about developing a program of exercises for what were were capable of doing and were positive and encouraging and I'm back to myself.

But it DOES take time, so take it one step at a time, don't expect too much of yourself too soon. Keep in close touch with your health team and report any symptoms, and if one med doesn't work they have many others they can try.

Come back here often, the chat room got me through many nights of insomnia. You'll find the most people there later evening, from about 9 to midnight central time.

Hi terri, I wanted to say you are not a wimp.  I had the exact same treatment as you and it was awful. Exact description of side effects as you.  Had to ask for IV fluids after each chemo instead of waiting til I was completely dehydrated.  It seemed to help a bit.  You should see if you can get fluids the day of your chemo and the. The next two or three days after also.  I noticed a difference but I had to ask for it and be my own advocate. My dr admitted it was a good idea and worth a try.  It is tough but you can do it.  I cry a lot too.  Good luck and message me back if you have any questions. I will try to help.  

Mary

I'm triple negative, so I did a different chemo.  I did 4 biweekly dose dense Adriamycin and cytoxan, then had 12 weekly Taxol.  On the AC, all I wanted to do was sleep the first three days.  Nothing sounded good, and I really wasn't interested in eating.  I had only mild nausea that was easily taken care of with meds.  The Neulasta shots make my thighs and hips achy like I had just done a really tough cardio workout.  After week three, the fatigue got so bad, it was all I could do to get off the sofa.  My white count got low enough that I was grounded.  As far as chemo, I was actually doing great, but I cannot imagine how anyone could work at all, much less a full-time job while feeling like that.  The first couple of treatments, I would feel more like myself the second week.  But the third treatment really got to me.  And what was weird to me is that I felt like I should have more energy than I actually did because of the steroids.

When I started the weekly Taxol, I was given the IV Benadryl.  I would sleep through the hour long infusion, then go home and sleep for another 3 or 4 hours.  After that, I would feel pretty good.  Long about week 4 or 5, I started feeling some mild fatiguie and started to notice a weird rash on my hands.  I also had some neuropathy that came on so gradually, I don't think I realized what it was.  I did end up buying myself a cane because I started getting a little unsteady on my feet.  By week 7, the rash was much worse, my hands felt like they were raw and blistered, and my whole body was one giant itch.  The oncologist gave me a couple of weeks off chemo, but after a couple more weeks on the Taxol, the rash came back so I ended up doing steroid packs both times.

That sounds horrible, but I actually had a good experience.  I have read about so many women that have reactions that will actually land then in the hospital.  Just be sure that you are reporting ANYTHING that doesn't seem right, and if it is an odd hour, or between appointments, if it is concerning, CALL.

Good luck, and sorry you are going through this.

nanacin said:

same experience

I feel like you wrote my story for me. I went to the dermatologist and was given an ointment to use for the rash and it worked. Also used Dove for sensetive skin. 16 chemo's and 33 radiation treatment. I am diabetic and had on going infections but they were all treatable. I have now lost two toenails. yuck. I feel proud to have made it thru all of my treatment's and am slowing getting well again. We can do this.

 

I also got a bad red, sunburn with peeling, and spots, very itchy rash on hands & arms. The chemo nurses & derm said I had the worst theyd seen, lol. I finished Taxol last week. The peeling isnt as bad, the redness & itching are better. I'm still on steroids, some other med, Claritin & ointment.. I also ice them a lot. Back to dermatologist next week. I got the neuropathy in fingertips even though i`m on meds for neuropathy. My nails are weird & hurt. I'm using Eucerin for Eczema itching & its really nice and thick. I recommend it for any skin dryness or irritation.

twnkltoz said:

Something I learned from

Something I learned from marathon training: fuel and hydrate before you need it, starting two days before. I have chemo on Wednesday, so I start really pushing fluids and protein today. Then my body is in good shape going into treatment. Get as much in as you can while you still feel good, then maybe it won't go so far and you can keep it up. I do the mouth rinses three times a day, every single day whether I need it or not. 1/4t baking soda, 1/8t salt, 8oz warm water. Then rinse with warm water.

I think I've posted here about it before, but the Relief Band is amazing for nausea. I don't need meds when I have it on. Get the one with replaceable batteries.

Oh Gee I guess I missed your first post in July.......sorry.   Did anybody mention that sometimes a frozen fruit bar or even just ice cube can help with keeping hydrated.  Not being able to drink water is really bad...I hope you have found a way to get past that because you must stay hydrated.  Please keep posting...sending prayers for strength and courage.   Glo