Side Affects AFTER CHEMO

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Gail Perry

Seminole, FL

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#264
Oct 7, 2012
 
Patski wrote:
<quoted text>
I know this is horrible to say, but I am not sure I agree with the first part of your response at times.
Last chemo was 1/5/12 and the hits just keep on coming. I'm not suicidal or anything, but I have made the choice not to take my estrogen blocker. I just feel too bad any given day to take it and feel worse. Quality of life does mean something to me. Please others take note, I had a very bad reaction to the ATC(?), so I only speak for myself. The arthritis has gotten worse though the doc said it wouldn't, and the chemo brain is awful.
Chemo is a killer of the spirit and the soul.
For some people.

I would urge people to suck it up enough to give the hormone treatments a try, even tho for me they were awful. If you read that thread you'll see that others do well on them.

I would also urge people to get a second opinion before having chemo (my first oncologist, the one I dumped, told me not to do it!)--

The second oncologist agreed with most of my plan but we tweaked it in a way that was beneficial to me.

Fortunately for me the first oncologist was pregnant. When she left for maternity leave, not far into my treatment, I was handed off to a new one I liked much better. I stayed with him when she came back.
Corinne

Salmon Arm, Canada

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#265
Oct 7, 2012
 

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Patski,
I understand the conundrum of wishing death over life sometimes, you're not alone. But, I know there's hope - at both ends. When I was in the middle of Chemo, one of my worst days, my niece, then 14, came into my room and sat with me for a bit. I told her that this Chemo crap sucks big time and that if I ever had cancer again I wouldn't take the treatments, her response, "so you'd just let yourself die?". The look in her eyes made me realize that she didn't want me to die but to fight as hard as I could to be around for as long as I could. That kinda woke me up, it's not just about me, it's about the people who love me too.
Be encouraged, because people want you around even if they don't always tell you.
Patski

Ventura, CA

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#266
Oct 7, 2012
 
Gail Perry wrote:
<quoted text>
For some people.
I would urge people to suck it up enough to give the hormone treatments a try, even tho for me they were awful. If you read that thread you'll see that others do well on them.
I would also urge people to get a second opinion before having chemo (my first oncologist, the one I dumped, told me not to do it!)--
The second oncologist agreed with most of my plan but we tweaked it in a way that was beneficial to me.
Fortunately for me the first oncologist was pregnant. When she left for maternity leave, not far into my treatment, I was handed off to a new one I liked much better. I stayed with him when she came back.
I rather resent your phrase of "suck it up enough to give hormone treatments a try." Every person diagnosed with cancer has "sucked it up" in making their decisions concerning treatment. If I have chosen not to go with hormone treatments after trying two of them with side effects that amplified the chemo side effects that is my personal decision. I have "sucked it up" enough to decide that with my remaining time, I would rather chance a shorter time with some quality of life than an extended life with none. I am happy to hear that you were able to make your decision, but it was no more gutsier than anybody else's decision.
Gail Perry

Seminole, FL

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#267
Oct 7, 2012
 
Then you did try them. Maybe I misread your earlier post; it sounded to me as if you hadn't and wouldn't.

I made the same choice you did. i decided to walk away from hormone treatments also, knowing that I might be shortening my life.

I still urge people to *try* them; some people do well on them -- but not me.

It is the one place where my doctor was not completely honest with me -- because he wanted me to take them.

Since: Mar 12

U.K

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#268
Oct 12, 2012
 
Patski wrote:
<quoted text>
I know this is horrible to say, but I am not sure I agree with the first part of your response at times.
Last chemo was 1/5/12 and the hits just keep on coming. I'm not suicidal or anything, but I have made the choice not to take my estrogen blocker. I just feel too bad any given day to take it and feel worse. Quality of life does mean something to me. Please others take note, I had a very bad reaction to the ATC(?), so I only speak for myself. The arthritis has gotten worse though the doc said it wouldn't, and the chemo brain is awful.
Chemo is a killer of the spirit and the soul.
i made the same decision for the same reasons. It's not tolerable for everyone.
One thing I will say to you is i'm a year ahead of you in that i finished the chemo part of treatment last June. Although i've found the side effects are far from gone they have lessened enough for me to feel i made the correct choice in having chemo treatment. i think now that the chemo brain will never be the same as before and physically too i've aged about 20 years, but hopefully you'll find as i did that there will be some better days in between the painful ones and those better ones gradually get more frequent.
It is soul destroying and personally i feel it takes a year, if not years, to adjust to and accept your new physical and mental condition.
Corinne

Salmon Arm, Canada

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#269
Oct 12, 2012
 
Alive is better than dead, not just for me/us though. One day when I was having one of my really bad Chemo days my niece came home from school (my sister & nieces moved here to take care of me) and sat with me. I told her that I hate this and if ever I have cancer again I wouldn't do Chemo...she said "so you'd just let yourself die?". The look in her eyes made me realize that she wouldn't want me to just give up and die, she would want me to fight because she wanted me around as long as God grants. Yes, suffering and staying alive isn't always just for us. I realized that I'm not the only one going through this crappy cancer stuff, it's the ones around me too.
Just my thoughts.
Corinne

Salmon Arm, Canada

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#270
Oct 12, 2012
 

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Oops, I already shared that story...Chemo brain.:) Actually I didn't see it posted. Sorry.

I am 3 years done treatments and I am finding my teeth are starting to fall apart. I've developed allergies that I never had and really bad arthritis. Perhaps some of this is due to age, but I know the Chemo has helped all of this along. Dream Carousel said that Chemo's aged her 20 years - my oncologists said that it has put at least 10 years on my life.

I still stand by...I'm better alive than not. Since cancer I've been able to help my sister raise her daughters through their tough teenage years (and for one it's been - still is - very rough). Such a priviledge to be part of their lives and help in this manner.

There is so much to live for, God isn't finished with us yet...there is a purpose in it all, I believe that.

Sending encouraging thoughts to you all!
maryanne

Grove City, OH

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#271
Nov 8, 2012
 
I am sooooooooooo happy to hear all the comments as well. I am a year with ovarian cancer i was very very lucky to be even living and yes i should right a book with experience as well since i had lots and lots of complications with all that i went through I had a 70lb tumor that burst and 18 liters of fluid . I been soooo blessed i did have six rounds of chemo . I also had to deal with when they put an a line pick in me . Image me of course i was one in million that they blew all of my nerves and everything in my left arm and hand . I thank god that i still have my arm and hand they wanted to cut if off . I also had surgical herrina repair which as not been fun as well . i been a real mess . But i have neuropathy as well in my feet and toes and now stiffness in my finger and tips . i been on a drug called Gatipen and having to pain medicine too. I believe in my heart that this is all premanet damage . This makes me smile to know that i am not alone . The doctors are wanting to send me to a pain and power mangement to get my pain under control . How can u do that when u are left like this it makes u think u are going crazy . they say all this will go away but like i said i believe i have this for life and what can u do . I been crying and depressed over i am age 48 thank u all for giving me some hope that i am not alone in this world and that i am not going crazy . Thank u God in your Preicous name Amen .
Gail Perry

Saint Petersburg, FL

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#272
Nov 9, 2012
 
maryanne wrote:
I am sooooooooooo happy to hear all the comments as well. I am a year with ovarian cancer i was very very lucky to be even living and yes i should right a book with experience as well since i had lots and lots of complications with all that i went through I had a 70lb tumor that burst and 18 liters of fluid . I been soooo blessed i did have six rounds of chemo . I also had to deal with when they put an a line pick in me . Image me of course i was one in million that they blew all of my nerves and everything in my left arm and hand . I thank god that i still have my arm and hand they wanted to cut if off . I also had surgical herrina repair which as not been fun as well . i been a real mess . But i have neuropathy as well in my feet and toes and now stiffness in my finger and tips . i been on a drug called Gatipen and having to pain medicine too. I believe in my heart that this is all premanet damage . This makes me smile to know that i am not alone . The doctors are wanting to send me to a pain and power mangement to get my pain under control . How can u do that when u are left like this it makes u think u are going crazy . they say all this will go away but like i said i believe i have this for life and what can u do . I been crying and depressed over i am age 48 thank u all for giving me some hope that i am not alone in this world and that i am not going crazy . Thank u God in your Preicous name Amen .
Of course you're depressed, you poor thing, after all you've been through ...

but look at your last line.

I think you have the right attitude to go to pain management. Just don't look at it as a GUARANTEED success. Go ready to listen and learn, but don't assume, as there are always a few people it doesn't do much for.

But what do you have to lose? And you'll also meet people *in real life* who are going what you are going through. They will understand. Everyone there will believe you, and support you, and maybe it *can* make things better.

Give it a try. You have nothing to lose. I hope you'll come back and let us know how you're doing.
Lori

Lancaster, CA

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#273
Nov 13, 2012
 
Hi,
Yes I am having the same problems you described. I am tired all the time, achy in my joints, and I am 47. I haven't started radiation yet, but will be and I'm exhausted all the time. I gained weight also and don't know how to start to loose it since I'm too tired to even go for a walk. I have the neuropathy in the hands also. I think we just have to do what we can, take it day by day and try to stay positive. At least we are still alive.
Hang in there, Lori
DENISE wrote:
You don't hear much about what happens to our bodies AFTER Chemo. If anyone knows anything about this let me know. I had problems with Arimidex, causing "Neuropathy type symptoms". All the joint pain I got from using Arimidex, never left.
Also I now have "Connective Tissue disease" an autoimmune disorder. Which causes pain in most/all my joints and fatigue.
Also, I was "dropped into menopause"...
I'm 45, its been just over a year since I finished Chemo(4 double AC's) 26 weeks and Radition, 30 treatments.
I'm having a hard time dealing with this disease twice, no-less menopause, fatigue and joint problems, and I'm still trying to get the weight off after all the steroids. Thought it would be a chemo diet....thought I'de lose 20 pounds...no I gained about 30! And I'm tired and achy...Anyone else?

Since: Mar 12

U.K

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#274
Nov 17, 2012
 
Hi again.
Yes the weight gain from early menopause is a problem, especially since most surgeons are unwilling to do the reconstructive breast surgery on anyone who's overweight.
Personally i found the radiation wasn't easy but compared to chemo it was an absolute breeze! hopefully you'll find the same.
Further on down the line, I can say the tiredness, although by no stretch of the imagination has it gone, it has improved. Some days i find it's as if my treatment only happened last week, but there are better days too and they get more frequent. The same i've found for the depression, nerve/joint pain (the hand dexterity hasn't improved), concentration/memory.
As i know i've said before, i think we have to come to terms not only with having had cancer but with our new and not improved bodies/brain which has aged before it's time. The way i'm starting to see it now is (instead of wondering whether it was ever worth it and perhaps i'd prefer to have died), if i can get through all that treatment and the cancer itself then i can get through all the after effects even the permanent (which most appear to be) ones.
Like you said Lori we just have to hang on in there.
Gail Perry

Saint Petersburg, FL

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#275
Nov 17, 2012
 
Dream Carousel wrote:
Hi again.
Yes the weight gain from early menopause is a problem, especially since most surgeons are unwilling to do the reconstructive breast surgery on anyone who's overweight.
Personally i found the radiation wasn't easy but compared to chemo it was an absolute breeze! hopefully you'll find the same.
Further on down the line, I can say the tiredness, although by no stretch of the imagination has it gone, it has improved. Some days i find it's as if my treatment only happened last week, but there are better days too and they get more frequent. The same i've found for the depression, nerve/joint pain (the hand dexterity hasn't improved), concentration/memory.
As i know i've said before, i think we have to come to terms not only with having had cancer but with our new and not improved bodies/brain which has aged before it's time. The way i'm starting to see it now is (instead of wondering whether it was ever worth it and perhaps i'd prefer to have died), if i can get through all that treatment and the cancer itself then i can get through all the after effects even the permanent (which most appear to be) ones.
Like you said Lori we just have to hang on in there.
I suggest you get a second opinion on the reconstructive surgery. I'm overweight and my surgeon seemed somewhat offended that I didn't want it, and I'm overweight.
Robin

Bremerton, WA

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#276
Dec 26, 2012
 
My mom is 63 years old and found out that she has breast cancer (in sept. of 2012) and had her right breast removed within two weeks then had 3 chemo treatments and on her fourth visit the dr said her body was not up for it. She was hurting all over and her legs barely work. She hasn't had a treatment since the end of November and is still feeling week with leg pain. Now she is complaining of eye twitching and bright flashes in her eyes. I'm trying to get her to call the dr because I'm worried but she is very stubborn. Has anyone else had these problems or heard of them? Thank you for your time.

Since: Feb 10

Ballwin, MO

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#277
Dec 27, 2012
 

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I have never heard of it. What chemo drug were they using?
vicki

United States

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#278
Dec 28, 2012
 
Pat wrote:
<quoted text>
I just finished chemo and am starting radiation in 1 week. i am feeling the same symptoms you are experiencing. I have a drs appr today because I feel like i jave the flu but no fever. My right side of my head is congested and my right side of nose is draining. I have been in and out of bed all week due to this and fatigue!!! I'm also feeling a little depressed and feel like crying. What is going on here? I will try to get answers today. hope things get better for you and for myself!!
let us know.
Joy

Allen, TX

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#279
Jan 7, 2013
 
My 41 year old daughter had a double mastectomy for Stage 2 breast cancer in March of 2012. She went thru 4 rounds of chemo (Cytoxan &Taxotere) and came thru the surgery and chemo seemingly well.
She did lose all of her blond hair, but it is coming back in a dark curly brown. She has developed high blood pressure - for which she is taking meds. She went from 129 lbs. to 118 lbs.- though she has an excellent appetite. And she is taking Tamoxifen.
In the last month, she has developed a tremor in her left arm and hand (the arm that took the chemo injections). Her arm is sore from the shoulder to the wrist.
The doctors seem to think the tremors have been caused by the surgery, chemo, and stress of the situation.
After reading a lot of comments, I see that sore muscles are fairly common. Has anyone else come in contact with tremors?
Thank you...
sharon

Norfolk, VA

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#280
Jan 12, 2013
 
yes Denise I too have the same problem. my joints hurt constantly all over and I have the numdness as well sometimes.Idid not have
these pains before chemo.I also did radation .I had breast cancer
in 2011.
patski

Ventura, CA

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#281
Jan 12, 2013
 
sharon wrote:
yes Denise I too have the same problem. my joints hurt constantly all over and I have the numdness as well sometimes.Idid not have
these pains before chemo.I also did radation .I had breast cancer
in 2011.
Yes, I have complained before about the after effects of chemo for some people. It was one year since last chemo on Jan 5th. The arthritis is progressing. Rheumatologist consult had told me it wouldn't get worse. Ha. Yes, I am bitter about it. What I wouldn't give for one absolutely pain free day with abundant energy!
I have been on meloxicam since which I am now stopping. My Dr and I have been discussing that it is adding to the problem. Anybody else not happy with meloxicam - besides that it could you a stroke.
I am not the total curmudgeon I come across. But since chemo haven't any of you been noticing articles about chemo being more of a problem than its worth?

Since: Dec 12

Saint Petersburg, FL

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#282
Jan 12, 2013
 
patski wrote:
<quoted text>
Yes, I have complained before about the after effects of chemo for some people. It was one year since last chemo on Jan 5th. The arthritis is progressing. Rheumatologist consult had told me it wouldn't get worse. Ha. Yes, I am bitter about it. What I wouldn't give for one absolutely pain free day with abundant energy!
I have been on meloxicam since which I am now stopping. My Dr and I have been discussing that it is adding to the problem. Anybody else not happy with meloxicam - besides that it could you a stroke.
I am not the total curmudgeon I come across. But since chemo haven't any of you been noticing articles about chemo being more of a problem than its worth?
Not to me, because I'm alive and I didn't have to be.

Since: Feb 10

Tampa, FL

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#283
Jan 18, 2013
 
sharon wrote:
yes Denise I too have the same problem. my joints hurt constantly all over and I have the numdness as well sometimes.Idid not have
these pains before chemo.I also did radation .I had breast cancer
in 2011.
You know, it just occurred to me -- that after each Taxotere I had to come in a couple of days later for a shot that supported my immune system, and that caused severe pains that moved around. They were weird. But it did stop after the shots stopped.

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