side effects of chemo

DorisB

I need as much input on the side effects as I can get before I chose to do this espically the memory loss thing. Please help!!!

rgilliam8867

Besides hair loss (came back naturally curly:) and some toe neuropathy (loss of feeling)/tingling, (went away after a few months), and temporary menopause (which I didn't mind at all). I didn't experience any major memory loss from my chemo. Sometimes I have more trouble remebering people's names that I don't come in contact with on a daily basis, but I don't know if that is related to the chemo, or because I'm so busy and I don't talk to them/see them frequently. Nothing unmanageable, however. There is a clinical trial out there that is testing the use of Ginko to see if it helps w/ reducing the reported occurrance of memory loss possibly related to chemo that you might want to check out--see if your oncologist can get you into the study--not sure if it's still accepting participants or not. Good luck and God Bless!

Rita

anet

Hello Doris,
You asked what is next for me...I am not sure the time frame for all this but after my drains are removed, I think they will be giving me a break before they start adding fluid to my expanders. I believe this will happen once a week until the expansion is complete. Then I will have the next surgery to replace the expanders with implants (I think I will have the saline implants). After the implants, I am planing to reconstruct the niples, I did keep my areola...I hope they do not move very far. If they do they will be replaced.
Since I did double mastectomy, I have been told that this is enough treatment for my DCIS. My sentinel nodes were clean. I will be doing the genetic tests to see if I have to worry about my ovaries.
My mom had radical mastectomy only on one side and had to take femara for 5 years and she did good. My aunt did lumpectomy, clean nodes, but was recommended radiation, and chemo and did the whole thing. She lost her hair but did very well with everything else. I hope this helps somehow.
Please, let me know how you are recovering.
Hugs!
Anet

Susan956

Other than being very tired... I did not have any issues with memory loss. I have heard others complain of Chemo brain... but I never experienced it.... But being tired was an issue and I had to choose what things were most important to me and prioritize the items that I wanted to do.

Susan

OregonSeaStar

I had 4 rounds of A/C and its been about a month since my final treatment. So far, I haven't had any problems at all with memory loss (at least, none that I can remember! . I had (and still have) a problem with being cold all the time since I started chemo. Nausea was a big problem, too, but fairly well controlled with a combination of several anti-nausea meds. About a week after each chemo, I got mouth sores that lasted about 10 days. These were never terrible for me, just annoying as they forced me to temporarily give up citrus, hot drinks, anything acidic. Fatigue was (still is) a major issue. As Susan said in her post to you, one needs to pick and choose carefully for a while what you want to expend energy on. On the day after each chemo, I was given a Neulasta shot. The only unwanted side effect of that for me was some intermittant bone pain in my lower back and pelvic area. Although I was given pain meds for this, I found that Tylenol worked well enough to take the edge off the pain and that satisfied me.

Everyone reacts differently to chemo! I know some ladies that sailed through it with nothing more than a little tiredness - even working and having a family. We here are just a small sampling of all the women who have gone through chemo. I was VERY frightened of it, but chose to go ahead anyway. At no time during my months of chemo was I sorry about this decision. Certainly no one wants to be sick, tired, or in pain. But IF you have any of these side effects, know that they are TEMPORARY. Talk to your oncologist about your concerns and fears.
-shelley

RNHF1986

I had FEC (fluorouracil, epirubicin, cytoxan) plus taxotere and taxol. The FEC caused hair loss (came back curly and a little darker), menopause (don't think periods will come back because it's been 1 1/2 years since chemo), but not much nausea. I did kind of have "chemo brain"--a little short-term memory problem, but no residual effects at all in that area. I also had some problems with getting a red flush on my face and chest (don't know if it was the chemo or the drugs that were used to help me after each chemo treatment). I didn't take most of the nausea stuff after treatment after the first round because I found that whatever they did before the treatment worked fine for me and I didn't need anything else afterward. My big problem though was with Taxotere--had some burns from that and loss of fingernails and toenails (plenty of others I knew going through the same treatment had absolutely no trouble with this whatsoever). I took Neulasta shots after the last of the FEC and after the 2 Taxotere and 2 Taxol treatments. It caused bone pain that was really not too fun. I took Taxol because I couldn't take any more Taxotere. It seemed to be fairly easy on my system except for neuropathy and tingling in my fingers and toes. I still have some of that now even though it really isn't that bothersome. I was certainly tired throughout. My whole regimen was pretty hefty in terms of chemo--my cancer was agressive.

With all that being said, every person I know has had varying experiences with chemo. The nurses can tell you what the average person will experience. This disease is so individualized, just like the treatment. Please, know that I'm doing great now and that I wish you the best of luck with your treatment.

Becky

LesleyH

Researchers believe that Chemo brain affects approx 30% of women who undergo chemotherapy. Having said that, I really have never met anyone who claims to have experienced chemo brain. I actually think that I was better than before. I continued to work, wrote research papers and presented at conferences. Personally, I believe the memory loss (it is actually more like being unable to retrieve information from long-term memory - perhaps because it was poorly encoded in the first place) is due to the trauma of the diagnosis. Post traumatic stress inteferes with your ability to process information. There is a known correlate that occurs during pregnancy, but we don't talk about pregnancy brain.

Hugs.

Lesley

24242

Hey Doris,
I was young at the time of my own diagnosis and at stage 3 with 11 out of 21 positive nodes chances of survival much like a crap shoot. I did read all the fine print on the cocktail I was given and did experience most all side effects. That doesn't mean I wouldn't do the same thing again if I had to. None of us know until we get there. It appears that from what I have heard over the last 10 years of my survival is still genetics truly affects about 10% of all cancers. It sort of appears that those odds were the same with being overly sensative to everything they did including having double mastectomies. Surgery comes with owns set risks. I have found the best thing I could do for myself was minimize the risks the best that I could and that also has gone to say with facing possibility of reoccurance. I can minimize the risks that I choose take and I have found exercise has been a real part of the healing process for me.
My thoughts are with you
Tara
ps chemo brain is real and have had to deal with it but that usually comes from the amounts of drugs given depending on stage, type of cancer as well as health of patient. My mind has never been the greatest for memmory but have noticed a huge decline as well as worsening eye site. Dry mouth another problem that we need to face since this is one of the hardest things on our teeth which no one was descussing at time of my treatments and drug taking.

babs49242

24242 said:

Hey Doris,
I was young at the time of my own diagnosis and at stage 3 with 11 out of 21 positive nodes chances of survival much like a crap shoot. I did read all the fine print on the cocktail I was given and did experience most all side effects. That doesn't mean I wouldn't do the same thing again if I had to. None of us know until we get there. It appears that from what I have heard over the last 10 years of my survival is still genetics truly affects about 10% of all cancers. It sort of appears that those odds were the same with being overly sensative to everything they did including having double mastectomies. Surgery comes with owns set risks. I have found the best thing I could do for myself was minimize the risks the best that I could and that also has gone to say with facing possibility of reoccurance. I can minimize the risks that I choose take and I have found exercise has been a real part of the healing process for me.
My thoughts are with you
Tara
ps chemo brain is real and have had to deal with it but that usually comes from the amounts of drugs given depending on stage, type of cancer as well as health of patient. My mind has never been the greatest for memmory but have noticed a huge decline as well as worsening eye site. Dry mouth another problem that we need to face since this is one of the hardest things on our teeth which no one was descussing at time of my treatments and drug taking.

Helloooo Doris!

Side effects..hmmmm I certainly have quite a few..BUT I would take them over being 6 feet under! I lost my hair,came back with one curl in the back all the rest was straight! is that being unique or what? I have neuropathy (loss of feeling)/tingling in my legs/feet,wrists and fingers & my hubby wonders why I keep hitting myself. HA I had little nausea, I was given Emend,it worked wonders. I was pushed into menopause(hip hip horray) and suffer the POWER URGES,,they're not too bad I take Vitamin E to help that. I was taking Ginko, Doc told me to GET OFF that cuz it interfered w/ my Arimidex drug.
I forget things in the middle of a sentence,sometimes where I am going while driving,and words that are at the tip of my tongue that just do not want to be spitted out.
Because I had such strong doses of Chemo, I am allergic to items that I was never allergic to before,my teeth hurt constantly,yes my teeth,and once in awhile my boob(one that is gone) feels like it gets in the way..go figure.
Anyway, I am living a good life..some days it feels like I never had Cancer BUT then I look in the mirror and say ..ooopps where did that boob go?!?!?!!
everyone is different in their reactions to chemo. and radiation I otherwised breezed thru the treatments. Wouldn't have done it any other way.
Keep a GOOD attitude & humour & lots of supporting beings around you. this site is great!
Take care,
Be good to yourself and drink water,water,water and rest!
Cindie 3 yr survivor woo hoo

RNHF1986

babs49242 said:

Helloooo Doris!

Side effects..hmmmm I certainly have quite a few..BUT I would take them over being 6 feet under! I lost my hair,came back with one curl in the back all the rest was straight! is that being unique or what? I have neuropathy (loss of feeling)/tingling in my legs/feet,wrists and fingers & my hubby wonders why I keep hitting myself. HA I had little nausea, I was given Emend,it worked wonders. I was pushed into menopause(hip hip horray) and suffer the POWER URGES,,they're not too bad I take Vitamin E to help that. I was taking Ginko, Doc told me to GET OFF that cuz it interfered w/ my Arimidex drug.
I forget things in the middle of a sentence,sometimes where I am going while driving,and words that are at the tip of my tongue that just do not want to be spitted out.
Because I had such strong doses of Chemo, I am allergic to items that I was never allergic to before,my teeth hurt constantly,yes my teeth,and once in awhile my boob(one that is gone) feels like it gets in the way..go figure.
Anyway, I am living a good life..some days it feels like I never had Cancer BUT then I look in the mirror and say ..ooopps where did that boob go?!?!?!!
everyone is different in their reactions to chemo. and radiation I otherwised breezed thru the treatments. Wouldn't have done it any other way.
Keep a GOOD attitude & humour & lots of supporting beings around you. this site is great!
Take care,
Be good to yourself and drink water,water,water and rest!
Cindie 3 yr survivor woo hoo

I second the notion on the water--as my husband liked to put it, "drink, drink, drink, and I want to see you peeing on the hour" And, yes, dry mouth was an issue--make sure your dentist knows about the chemo--they can help you out if you have a good one.

I have to also say that I think that chemo brain does happen to some people. Why wouldn't putting toxic substances into our body affect our whole body, including our brain? At least temporarily. I'm sure you've seen in this discussion that we all had different experiences and I hope that you know that we're all trying to give you the best possible information that we can.

Please, take care of yourself.

Becky--2 year survivor on 2/23/07

DorisB

Thanks to everyone, you have all been such a big help, and this is a great message board!!!

loisbarrie

RNHF1986 said:

I second the notion on the water--as my husband liked to put it, "drink, drink, drink, and I want to see you peeing on the hour" And, yes, dry mouth was an issue--make sure your dentist knows about the chemo--they can help you out if you have a good one.

I have to also say that I think that chemo brain does happen to some people. Why wouldn't putting toxic substances into our body affect our whole body, including our brain? At least temporarily. I'm sure you've seen in this discussion that we all had different experiences and I hope that you know that we're all trying to give you the best possible information that we can.

Please, take care of yourself.

Becky--2 year survivor on 2/23/07

This is a great site. I was a IIb and not a candidate for tamoxifen. One round of A/C and one round of Taxol. I took Neulasta after each treatment. I did not have a port. I had 3 of 17 lymph nodes positive and have always gone for checkups. Genetics were negative.
I worked through most of the treatments. It felt like a normal thing that I wanted to hang onto. I worked every other week, and did chemo the opposite week. I only had a little nausea and it was not enough to slow me down. I felt like I'd been run over by a truck with the neulasta....extreme fatigue and body aches. sometimes I wondered if I wanted to keep doing the neulasta...I could not "rest" away the fatigue from that. But, I continued to take it...I figured that it was going to ensure that I could keep finishing the chemo....and I just wanted that DONE. I lost my hair. No big deal..I looked pretty good bald. I did have fun with wigs for work. When my eyebrows and eyelashes fell out, I was more bothered. I tried fake eyelashes..sometimes it was fun and sometimes it was a tear jerker. I gained 40 pounds. Steroids for nausea, and then just laying around. ugh. That was the most distressing piece that I was forewarned about. I finished radiation in February, and this week I went 5 miles on my bike, and I portaged my 50 lb kayak for the first time since this all started. yeah! Decreased libido? The brain is the biggest sex organ, and I have never lost desire. Sometimes very tired, but never loss of desire. I'm one year of no periods, so one less thing to think about. I can't take HRT, so I think insurance should at least cover "personal lube". (really) I'm 47..a lot of good years left!
I had bone pain with the taxol and neulasta. 10/10. dilaudid took care of it for me. I had some neuropathy..painful numbness and neurontin took care of that.
The one Side effect that no one discussed ahead of time with me was chemo brain. I was so angry. No. SO angry. I still am angry. I feel like I lost a third of my vocabulary. I'm a nurse. I cannot remember words...or I do not understand what is said. I have a GPS that I use for housecalls. Sometimes I suddenly do not know where I am, and then cannot understand what the GpS is saying. It brings me to tears. what really makes me angry is that there is no
standardized treatment protocol for this. They tell me, rest, read, do yoga, get massages, learn to destress...sounds so much like a closed head injury treatment. The thing that made me the most upset was that I asked if this crosses the blood brain barrier and if so...side effects? I have yelled at my oncologist about not telling me ahead of time. It felt good to do so. She asked what difference it would have made.
I would have balanced my time off differently, and i would have made sure my paper work files were in order. I'm trying to refi my house here in Mi, and can't find my 2006 forms....no idea.
Now that I'm focused more on what I can do in this "new norm", I'm going to compile a "treatment plan" based on the warm, fuzzy advise from my doc. I used to be a medical auditor and I'm going to do what was advised and I'm going to challenge the insurance companies. It took a long time for reconstruction to be paid for. I just need to feel like I've done something in an attempt to help myself. I'm going to be seeing a neurologist this month. I"m practicing qigong (sort of like tai chi) and have found it to be very helpful. I'm learning to say no to overtime, and I am out there doing kayaking and bicycling like it's my medicine....it is. I was told 1-10 yrs for this to go away..."don't know". I do notice that it is not as bad if I say no more often to people and only do what I really feel ok with. Some people are ok with this, and some people doubt it. Whatever. Two things really important to me are the ability to think and good sex. I can get breast reconstruction, but not a new brain. There is no Emerald City, or OZ, but my way of giving cancer tx both my thanks and my anger is to take charge of my recovery from tx. Besides the scenery on the lake is pretty doggone good, and I'm glad to be there to enjoy it.