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grandma41
@grandma41

Posts: 13
Joined: Mar 31, 2016

Diagnosed in October 2013. Side effects

Posted by @grandma41, Mar 31, 2016

I was diagnosed in October 2013. After a couple of lumpectomies I ended up needing to have a bilateral mastectomy. I went through chemo from Dec. 2013 through April 2014. I also had the Her2New protein that needed to be treated for 52 weeks, that ended in June of 2014.
Since my last treatment my hair really hasn’t come back, no eyebrows, my eyelashes look horrible as well as my fingernails and toenails.
The meds they have me on have created such bad hot flashes that at time I cannot breath. I sweat so bad that I’ve had to put baby bed pads under my sheets and on top as well. I was takin Anastrozole, at first. This caused such joint pain in my knees that I was having trouble walking. I now take Letrozole, this has cause trigger finger, my fingers curl during the night, I have to wear finger splints, a small consolation compared to the pain I was having before, however, this is has made my hot flashes worse, I never had flashes like this when I went through menopause.
I am now in constant pain, more like a flu feeling, very tired, no energy. I dread getting out of bed because I have so much trouble, then it takes me a good 30 to 60 mins. for me to get going. My hands hurt as well as every muscle in my body.
I take supplements to help the hot flashes and I can honestly say since I started taking the magnesium and the gabapentin (sp) they seem to be letting up.
I also have carpal tunnel in both hands along with bad arthritis which in itself has caused a lot of problems. I also have edema in my legs and feet along with lymphedema in my right arm and hand.
I have had two separate surgeries for reconstruction, after the first attempt, the side of my body that I had the radiation on broke open, had to pack it for 3 or 4 mos., then I had surgery to close it up. I had a bilateral latissimus and the opposite side of my body the tissue died. I had to pack it for another 4 mos. This last surgery they got it closed up, I go up on April 1, to have the stitches taken out and we’ll plan on the next step, putting the expanders in. I pray that goes well.
I’m tired of this, I’m depressed over it all, I no longer even look like the person I was. The meds have made me gain so much weight that I cannot fit in any clothes expect sweats or something stretchy. I can’t find shoes to fit me because of the edema that I have (it lasts for months at a time).
While I was on Chemo I had no edema problems, I had them for years, I never got a cold, never got sick, nothing. I know it’s a bad drug but in some ways I could actually wear my clothes and shoes. No I never lost weight while I was on chemo, my dr. told me most breast cancer women do no lose, they gain. Well I have definitely gained.
I retired in April of 2015, it’s as good think because I would not be working much. They probably would have asked me to leave. There is no way that I could get up and be at work on time because of the issues I have getting out of bed and moving.
Has anyone else experienced this? I know that I have not done a lot, but then again I could not do a lot. My oncologist wants me to exercise at least 45 mins. a day, I’m trying to figure out how to do that with all that I have going on. LOL It wears me out walking from the car to the door of a store.
Any suggestions or thoughts would be greatly appreciated.
Thank you!
Debbie

REPLY

Welcome to Connect, @grandma41.
Wow, things sound like there are pretty rough. The hot flashes sound miserable. How much longer do you have to take the medication that is causing them? Which medication is it? The aromatase inhibitor?

Exercising 45 minutes a day sounds like a tall order. Given the state you’re in right now that’s like asking you to climb Everest. But don’t let that get in your way of just doing a bit more today than yesterday. It doesn’t have to be Everest. Maybe it’s just parking a couple of spots further away from the store tomorrow. Just add a wee bit at a time.

I also tagging @brandysands @luladavis @maureenkarras @leemiller @martid on this thread to bring them into the conversation.

@colleenyoung

Welcome to Connect, @grandma41.
Wow, things sound like there are pretty rough. The hot flashes sound miserable. How much longer do you have to take the medication that is causing them? Which medication is it? The aromatase inhibitor?

Exercising 45 minutes a day sounds like a tall order. Given the state you’re in right now that’s like asking you to climb Everest. But don’t let that get in your way of just doing a bit more today than yesterday. It doesn’t have to be Everest. Maybe it’s just parking a couple of spots further away from the store tomorrow. Just add a wee bit at a time.

I also tagging @brandysands @luladavis @maureenkarras @leemiller @martid on this thread to bring them into the conversation.

Jump to this post

Debbie, you are dealing with a LOT. I also did the long treatment process
due to HER2+ but I was ER-, so the other issues caused by those meds you
take, I did not have to deal with. I did end up with chemo induced
peripheral neuropathy, so have challenges in the exercise dept. that might
be somewhat similar. I also have some heart damage from the Herceptin. My
cardiologist is very pleased with my walking program for exercise. Because
of the PN in my feet, it is difficult to walk for long periods at one time.
What I did was split it up. I tried to walk morning and night. Sometimes I
will throw in a third round if the weather is nice. After I built up my
endurance, I would walk a mile and then work in my garden for another 15 to
30 minutes. I am fortunate to live in a place that is perfect for walking;
what I did was start small and added going around another block and then a
few days later, add another block. Because of the challenges with my feet,
it took me more than a month to get up to walking a mile at a time. I got
a step/mile counter so I could tell how far I was walking and that was a
big help. I so totally agree that you need to just add a little each day,
or every few days – and if you need to back track, don’t beat yourself up
about it. Even if you are only doing a little bit, that little bit counts.

You also might try looking for some light yoga exercises on the internet.
you can run it on your computer and do them in your living room. Good for
your muscles and the breathing exercises help calm your mind.

The more I hear about reconstruction, the more I am glad that I did not
do it. All of that sounds so painful. I hope it gets better for you soon.
Marti D

@colleenyoung

Welcome to Connect, @grandma41.
Wow, things sound like there are pretty rough. The hot flashes sound miserable. How much longer do you have to take the medication that is causing them? Which medication is it? The aromatase inhibitor?

Exercising 45 minutes a day sounds like a tall order. Given the state you’re in right now that’s like asking you to climb Everest. But don’t let that get in your way of just doing a bit more today than yesterday. It doesn’t have to be Everest. Maybe it’s just parking a couple of spots further away from the store tomorrow. Just add a wee bit at a time.

I also tagging @brandysands @luladavis @maureenkarras @leemiller @martid on this thread to bring them into the conversation.

Jump to this post

I am taking Letrozole right now. I have eight more years on the drug.
Oh I am walking further and further, but when my feet are so swollen it hurts to walk.  I do park further away from the door and it wears me out, I do have to rest.  Then my hot flashes kick in which wears me out too!  LOL  It’s like a losing battle.
On top of everything else my general practitioner is no longer in my insurance group.
Thanks for responding.
 

Liked by martid

@colleenyoung

Welcome to Connect, @grandma41.
Wow, things sound like there are pretty rough. The hot flashes sound miserable. How much longer do you have to take the medication that is causing them? Which medication is it? The aromatase inhibitor?

Exercising 45 minutes a day sounds like a tall order. Given the state you’re in right now that’s like asking you to climb Everest. But don’t let that get in your way of just doing a bit more today than yesterday. It doesn’t have to be Everest. Maybe it’s just parking a couple of spots further away from the store tomorrow. Just add a wee bit at a time.

I also tagging @brandysands @luladavis @maureenkarras @leemiller @martid on this thread to bring them into the conversation.

Jump to this post

Hi,
I didn’t get the neuropathy from the chemo, so I was lucky that way.  But I have a lot of pain from the medicine I’m on.  I had had heart surgery in 1998 so they were very cautious with me regarding the Herceptin.  So far everything has come out good.  I have to go to the heart dr  2x year now instead of the 1x a year.
I use to walk 6 miles a day, I’m lucky if I can get up my driveway!  LOL I have edema in my legs and feet which makes it painful to walk because my legs and feet are so swollen, I can’t get any of my shoes on right now except cheap old flip flops.
It’s torture just getting up from sitting down and it takes me forever to get out of bed.  It’s to the point that I feel like I’m 85 and not 55.  I want to be able to keep up with my grandkids, which is really hard right now, thank goodness they understand.
I pray everyday that it gets better, but so far there has been no relief.
Thank you for your thoughts, I will keep pushing myself walk more and more.

 

Check your PBS TV channel for exercise shows. There are a couple that are specifically for people who are less mobile. They do most of them sitting and they last 30 minutes – I think. Might be just the ticket. If nothing else it would give you another option.

I noticed that you are also having the hair issues. If you were on Taxotere, that could be the culprit. They actually have a class action suit against them – saying we were not told that perm. hair loss was possible. I have a bald spot on my head and my hair is very sparse when it had been very thick. I have grown a bit of hair on the bald spot over the past 6 months or so. My eyebrows never came back; eyelashes only a little. I think that the Herceptin added to it because where others began to grow hair very soon after they stopped Taxotere – or other infusions – I did not. It finally grew a little, but very very little and did not really begin to grow until I finished with my Herceptin treatments, which went for 8 more months after I stopped Taxotere and Carboplatin. I was bald for a LONG time! There is a biotin/keratin shampoo that you can get at Walmart – similar to what they sell at a beauty shop but way cheaper. It helps some. You can take the supplements that have biotin added and they help some – but check with your oncologist first. You don’t want to take anything without approval. There are several attorneys handling the class action suit if you wanted to do a search on it. It was not something that I am interested in pursuing.

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