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Post chemo recovery

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I thought I'd start a new thread documenting how long it takes to recover from the various side effects of chemo, i.e., hair loss, neuropathy, etc.  I know everyone is different, but it might be of value for those trying to get an idea of what to expect post chemo.

I am 5 weeks post chemo, 6 rounds of carboplatin/taxol.  I did not completely lose the hair on my head, though it thinned considerably, and what was left did seem to grow a bit, though much, much more slowly than usual.  I lost underarm hair, pubic and leg hair.  Eyebrows and lashes gone.  Still had peach fuzz on my arms.  Just in the past week, my buzz cut seems a little thicker, especially in the back and on the sides.  It also looks a little more unruly than it has been, with a few hairs noticeably longer than others.  I also think I've got a few very nubby eyelashes now, which I can feel, but not see.  Still no sign of hair growing on my legs or underarms. (That can take its sweet time!)

My neuropathy was/is minor, numbness in my fingertips and toes, moreso on my left side than right, but no pain. The numbness in my right hand is almost gone and it seems to be improving every day.  Same thing with my toes.

While I didn't have nausea, I did have random stomach/digestive tract pains and gas and some heartburn.  The heartburn is pretty much gone, but the pains and gas, while diminished are still present.  I had switched probiotic brands towards the end of treatment with the new brand having a substantially higher count.  It seemed to exacerbate the gas, and I eliminated it.  That seemed to help.  I will probably go back to my original brand that's a little less intense and see how things go.  For me, the gut issues are the ones that I notice most, as I never had any problems prior to chemo.  

Please chime in with your experiences, ladies.

Chris

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

Thanks Chris.

I am 3 weeks and 5 days post chemo. I had 6 weekly treatments and 4 every 3 week treatments of carbo/taxol.  The amount of chemo and duration was the same 18 weeks as if I did the 6 every 3 week rounds.

I lost all of my hair unless you count the little white things that can only be seen with a 10 Xs magnifying mirror. :-)

So far, no hair or eye lashes or eye brows.

I still have neuropothy in my hands/fingers and feet/toes. It is getting better but still quite numb. Most of the pain is gone though. I am starting to get a bit of strength back in my hands. And, like Chris it gets a little better each day.

My stomach is only slightly queezy at times. But, I don't know if that is still a post chemo issue or because of the Brachytherapy that I just started.

My appetite has improved a bit but is still not back to normal. My normal taste buds are all just about back. Glad about that!

My blood counts have improved to the lowest normal levels. So I'm not at risk for infection now.  I actually went out to eat for the first time in 2 months. That was nice!

My energy still isn't great but is also improving a little each day. Had a bit of a set back yesterday due to the radiation.

Overall, I have little to no pain. And, I'm looking forward to having hair again soon!

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

I'm almost six weeks post chemo but I stopped after the third one because of severe side effects.

I have very little feeling in the fingers of my right hand with my thumb and pointer finger numb and my right hand shakes.  I dropped a mug of coffee this morning.  My left hand is slightly numb but doesn't shake.  I don't think either are getting better but at least they're not getting any worse. My toes are pretty numb too making my balance off.  I use a cane when I'm walking alone.  At night my feet feel like they're being poked by needles.  I got a prescription for this but it made my eyes spasm so bad I couldn't stand it.  The pain in my hips and legs seems to be getting better but I take half a Percocet every night before bed which helps.  The swelling in my legs and ankles is also much better although they're still swollen.

The rash on my face is getting better but the skin on my cheeks are still peeling.  My hand rash is totally gone and they're not pealing anymore.

I never lost my eyebrows or eyelashes although the rest of my hair is gone except some little sprouts on my head I never lost.  It doesn't seem like it's growing back yet.

My eyes are off especially my right one making it hard to read.  I have muscle spasms in both eyes and they water all the time.  I feel queasy after eating and have diarhhea most days. I also take probiotics since I was on antibiotics twice because my port was infected.  They took out the port but the wound is still wide open and drains....and it hurts.

My blood sugar that spiked into the 400s has come down but is still too high.  My doctor put me on Metformin.  My blood pressure that went as high as 240/160 during chemo has come down after my doctor put me on simvastatin.

My taste buds have almost come back although my tongue still feels burnt.  I've lost about 30# which is good.

I am still unbelievably tired most of the time.  I sleep about nine hours during the night on and off and take an afternoon nap.  I haven't had a nightmare for the last week but still have the repeative dreams most nights.  I've really resisted taking prescription sleeping pills but do take a Tylenol PM every night.

I have to go back to my GP next month for blood rechecks.  My B12 and folic acid were really high and my D and magnesium low.  My liver enzymes were way off too and that's probably why those other vitamin and mineral levels are off.  I am hopeful my liver will recover!!!!  Liver failure worries me the most.  Most of the side effects didn't bother me until after the third chemo.  I still haven't recovered from it! I had one bad week after my first and second rounds and then I was fine. I truly believe a fourth round of Taxotere and Carboplatin would have killed me.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

Still NO HAIR! Not even a hint. No eyelashes or eyebrows either. Maybe next week?  Oh, except a darn chin hair. Go figure!

My energy level remains low. Probably a combination of the chemo and the Brachy.

My breathing is still labored when I try to do much repetitive movement. Even simple things like scrubbing the kitchen sink.

Appetite remains off. Sometimes I have a mild burning and feel queezy. Not bad, just not normal.

I continue to have little to no pain. Except yesterday my right leg and hip ached most of the day. Almost like it did when the bone marrow was building.

Neuropothy is getting better. My fingers and toes still have a numb sensation but I also have a lot more feeling in them.

Overall, feeling much better.

Love and Hugs,

Cindi

Cucu me
Posts: 214
Joined: Apr 2015

getting better and you'll have your hair for sure.

I recovered relatively fast and I feel good, just afraid from the spot on my liver.

So, head up and you'll be great!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

I am so hopeful that the spot on your liver is nothing! I would be afraid too if that happened to me. I think you get the results tomorrow, right?

Please take the time to do something fun today to help keep your mind off of the dark side.

Love and Hugs,

Cindi

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Your hair will come back, just give it some time.  Glad you are starting to feel better.  You have been through a lot and your body will need time to get completely back to normal.  Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

In the overall scheme of things..... Waiting for my hair is not all that important.  Not to say I am waiting patiently for it though! Especially my eyebrows and eyelashes! But, my journey has been easy compared to many of our friends and I'm grateful for that.  I'm still amazed at how much you and Ann have been through and continue to live positively. Talk about an inspiration to the rest of us! And, I know there are others on our board with a similar journey and I don't mean to exclude anyone here!

I am starting to take back my independance a bit more each day. And, I drove myself to Moffitt for the last two Brachy treatments. That is major progress! I had not felt strong enough to make that journey alone before that. And, it felt so good.

I do walk my little boys every day. And, I do something around the house. Just small things. My Radiologist says 2 weeks post brachy and I won't have any side effects so I'm hopeful that will bring a marked improvement in my energy. I know the breathing issues are chemo related so not sure when that will resolve.

I'm posting for those that are behind me.  Hopefully, it will give them a point of reference for their own recoveries.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

Anybody else lose their fingernails and toenails after chemo?  I noticed over the weekend several nails especially on my right hand that has the worse neuropathy, are loose.  I "googled" it and sure enough, some people lose their finger and toenails with chemo.  Good night nurse, what is next??  It will be seven weeks tomorrow since my last chemo and it's still haunting me.  

I also had a bad night last night with hip and leg pain on the left side.  I'm trying not to take anymore opiates but I can't be up half the night and go to work!  I'm going to take half of a Percoset before bed and have the other half ready if I wake up during the night.  I have an 8:20 a.m. appointment for wound care tomorrow but I noticed last night that puss was coming out of an area that looks closed up.  I bet they're going to have to open it up again tomorrow - d*mn!!

Chemotherapy - the gift that keeps on giving!! Tongue Out

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

One thing for sure...... You made the right decision on stopping chemo. Your body certainly isn't up to processing the "ingredients"!

I hope all of the things you lost, are returned sooner than later!

Please let us know about your port area when you get back! Hopefully it doesn't have to be reopened.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

I went to the Wound Care clinic this morning - we had about six inches of snow overnight, so my husband drove me in his 4x4 truck.  They found a "tunnel" under the healed part and that's where the puss was coming from.  It was very painful as they "cleaned and packed the tunnel."  My doctor wasn't there today so I saw her PA.  She told me next week if this doesn't clear up they are going to try injecting collagen into the wound - that sounds painful!!  But....I'll take the pain to get this thing closed!! 

She also told me that SOMETIMES people who are very sensitive to chemo or the chemo seems to linger in their bodies have problems healing.  I told her about all my side effects and she said that's probably the reason this d*mn thing won't heal!!  I showed her how my fingernails are coming loose and she said she never heard of that before as a side effect of chemo.

Love,

Eldri

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Hair is definitely growing out and I am getting fuzzier.  I can see quite a bit of dark hair, but I wasn't completely gray before, so hard to tell if it's more than I had before chemo.  I am excited that I can actually see my stubby little eyelashes!  They are not nearly long enough to put mascara on, but they are definitely coming back, and so are my eyebrows. And still no leg or underarm hair.

My fingers and toes are still slightly numb.  I'm guessing that this will take quite a while to disappear entirely.

My gut issues are inconsistent.  One day, I will have absolutely no pain and the next day, I will have random pains.  Still, it's better than when I was on chemo, so any progress is something to be grateful for.

My energy level seems to be pretty normal, though after driving home Saturday from San Francisco (2 hours) and attending a party Saturday night, I did feel a bit wrung out.  But I am exercising regularly, either on the bike for at least 30 minutes or walking for the same amount of time almost every day.

Eldri, at some point all of your issues will get better.  I am so sorry that chemo was such a horrid experience for you.  Everything you've gone through since would test my patience for sure!  You are so strong dealing with all of this!

Hugs, 

Chris

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

I'm glad you're feeling better, Chris, and your eyelashes and eyebrows are coming back.  I am getting better too....just very slowly.  I've found that if I get a decent night's sleep, my whole day is better.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

I'm happy to report that I have a little peach fuzz on the back and sides of my head. Nothing on top yet. I can't tell what color it will be - right now it is either clear or white.

No brows or lashes yet.

Neuropothy continues to get better. Except last night I experienced that sun burned feeling on the top of my left foot for the first time. It didn't last long.

Also, I stopped taking the probiotics to see if the mild burning in my stomach would go away.  It DID go away. So, I'm back to doing what I was before chemo. Which basically was only taking Krill Oil and Calcium.

My energy continues to build. Still isn't great but at least I have started doing more each day. My breathing continues to be a challenge, but is also improving.

My weight has remained consistent. No gains or losses. That's a good thing. I'm happy where I'm at.

One thing to mention - my port still bothers me off and on. I think I will make an appointment to get it removed. Hopefully that will not come back to bite me!

Overall, I feel a little better each day.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

It's great you're feeling better every day!!  

Love,

Eldri

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Big development is stubble on my legs.  Boo!  I was enjoying not shaving all these months.

Hair is coming in steadily, but thinner on the top.  I guess that's to be expected as that's where most of the hair fell out.  The hairs that didn't come out are about an inch long now, but most are far shorter.  Still hard to tell texture and color, but doesn't look too far from my natural color so far.

Right hand fingers are almost normal, left hand still some numbness.  Same with the toes. I find it odd that one side has had more issues with that than the other.  In any case, improvement continues.

As far as stomach pains go, I have discovered that my tummy wants to be fed a lot.  It's happy when it has food, but if I go too long without eating, it kind of lets me know.  Nothing severe, just a reminder that I should eat something.  This is actually a good thing, because it has not been unusual for me to skip lunch on occasion, which isn't good for me.

Other than that, I feel pretty darn normal.

I'm scheduled to have my first port flushing on Friday.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

My lashes and brows are starting to come back. I can only see them with the 10X mirror but at least they are there! And I can feel them when I rub lightly. Something not so great is the facial hair that is coming back faster than any of my wanted hair, darn it!

I read that head hair will grow about 1 inch per month. Mine is probably 1/16th of an inch! lol I can see a little on top now but can't tell what color yet.

Energy level is SLOWLY getting better. I can now walk at a fast clip for 5 minutes. Doesn't sound like much but it is a huge improvement.  I have walked my little boys every day since the beginning of this journey (except on the real bad chemo days). But that walk has lots of "smell stops" so doesn't push my cardio along as well as this solitary walk does. My hope is to improve this to 10 minutes within the next week. My blood should be built back up from the radiation so I think that is a reachable goal.

Neuropothy continues to improve. I still do have the pins and stinging sometimes. And my fingertips and toes are still numb. Just not as bad.

My right thigh is still numb but I think that may still be from the hysterectomy.

Overall, I am feeling better and I'm starting to do more stuff. I'm still not feeling normal yet. But, I'll get there.

Love and Hugs,

Cindi

 

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

It'll be nine weeks tomorrow since my last chemo and I found a little chin whisker. I was never so glad to see that little whisker in all my life!!  BC (before cancer) I would have just whipped out my little pink tweezers and pulled him out but not now - I am going to celebrate him as a start to getting my hair back. 

My eyebrows are still falling out and now my eye lashes, especially on my left eye where the eyebrows really took a hit.  I've been debating what to do about the eyebrows since in reality, I really only have one on the right side.  I penciled in the left one trying to match the right one which still has quite a few hairs but who am I trying to kid - they did NOT match.  So, I just pulled down some more bangs from my wig to disguise the left one and have been going out in public with one eyebrow - LOL!  I debated getting an eye patch and telling people my husband poked out my eye but most people who know him would know that's a big lie.

I've been getting my energy back too although my left hip and knee still hurt.  I even took a half of a Percoset last night so I could sleep.  I don't know if it's from the chemo or because I walk funny since the toes on my left foot are numb.

My first appointment for my three month checkup is March 22nd.  Who knows if it will be good or bad news but I do know, that until then, I am going to be happy and live my life like I don't have this "cancer monster" hanging over my head.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

I now have hair all over my head. Still have bald spots too but at least top, sides, back all have something. It is very soft and white.

Brows and lashes continue to fill in. Brows are white and short - right side way thicker than the left. My lashes are very short but I am putting mascara on for the heck of it. Makes a total mess but still fun. Thank goodness for QTips!

I have a marked improvement in my breathing and energy this week. I am now able to walk at a fast pace for 10 minutes. I met my goal. Now, my new goal is to try the elliptical this week. :-)

Also, over this last week, I used the cool cone dialator a couple of times. It worked well. So glad Chris shared that finding with us.

Neuropothy - My feet are "waking up" and my left foot is hurting now. The back of my heel feels like I am pulling the tendon apart when I stretch my foot. It aches off and on. And, my toes burn more. The ball of my foot aches if I stand up for an extended period of time. It seems like the pain would have been worse early on, not this far into my progress. My right foot isn't hurting at all. My right leg is still numb but doesn't hurt either.  I have one finger on my right hand that hurts. My hand strength is better but still not what I would call strong. I'll take better! Improvement is what I want over time.

Something to note: I had a day where I had a huge sense of well being. I felt great spiritually, emotionally and physically. I'm generally an upbeat, positive person. And, before cancer I had a lot of days where I knew my world was awesome. It was nice to experience that feeling again. Life is good and well worth the fight to still be here. Every day is special.

Love and Hugs,

Cindi

 

Gardena
Posts: 102
Joined: Jan 2016

It's just what I needed today, reading about your improvement and well being gives me hope and brought happy tears to my eyes. Wishing you continued strength~

ncg007
Posts: 132
Joined: Nov 2015

so happy for you on the progress you are making!  Wishing you continued strength

Nancy

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

Hopefully the pain is just the tail end of the neuropathy and will soon go away.  Tomorrow will be ten weeks for me since my last chemo and I noticed a lot more energy between eight and nine weeks.  For the past few nights I haven't taken any Percoset before going to bed - I had been taking half a pill for the pain in my left hip.  I walked around outside this morning with Spunky, my little dog, and had no pain. 

I'm so glad you're feeling better, Cindi!  I think emotionally is just as important as physically.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

Ladies, Thanks for your replies. I'm glad I posted Gardena. I almost didn't because I wasn't sure I had enough info to help anyone. But then decided to share the feel good day since our emotional spirit is important too (Eldri!).

Eldri - so glad your body is finally getting over the chemo hit. I'm sure Spunky missed a healthy Mom! :-)

Nancy - take care of yourself and finish up strong!

Love and Hugs,

Cindi

 

 

Donswife48
Posts: 293
Joined: Nov 2015

I use to say a quick prayer of thanks everyday for my perfect life, until it started to fall apart with my husbands health woes.  Then I thought, I still have everything I had before, just in a not so perfect (to me) way.  When I lost my husband, I wasn't sure anymore, but found peace and happiness again, then this.  Well, sometimes I need to be put in my place and be able to feel real peace and happiness in the everyday minutes.  I loved to hear you experience great feelings again.  Hugs Nancy 

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

(((Nancy))) it gonna get better.  Get those next two chemos in so your body can start to recover.  Much peace and happiness to you!!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

Wow! Can't believe it has been 2.5 months already... Time does fly.

I posted this on another thread and decided it needed to be on this one...

My neuropothy is getting more painful now as my numbness is wearing off.  My toes, heels and the top of my left foot hurts like crazy. I can't put any pressure on to top of my foot and stretching my achiles tendon really hurts. My legs are also more achy now. I have been using the elyptical instead of the brisk walking I was doing in hopes that would be easier on them but it doesn't seem to make a difference. On a good note: my breathing has improved a lot and I can go 20 minutes at 4.5 - 5.0 MPH. That is huge progress!

Also, I noticed that my feet get really cold at night when I'm in bed.

Other than the above, I'm feeling pretty good. Still have to rest in between stuff but my strength is returning.

Oh, my hair continues to grow but I can still see some scalp. My "used to be blond" hair is coming in very white on the sides and back and what looks to be black on top! I might end up looking like a reverse Oreo!! lol

Love and Hugs to All,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

I'm 12 weeks out from my last chemo.  Cindi, LOL, at LEAST you're getting hair back on the top.  Mine is coming in pure white and thick on the left side, white but much thinner on the right and I'm still bald on the top - kind of like male-pattern baldness - YIKES!!

So far not a lot of pain in my fingers but they're still pretty numb.  Four of the fingernails on my right hand have come off - that hand is number than the left, and one nail on my left hand has come off so far.  I think eventually, they will all fall off.  My feet, especially my toes, are still numb but the feeling that needles are poking in them is, for the most part, gone.  My feet are still freezing too - especially at night.  It seems as it gets toward evening I get colder and colder.  I started taking the L-Glutimine last week so I hope it helps with the neuropathy.

Do any of your joints still hurt?  I'm still having pain in my left hip, again, especially at night.  My stomach still has cramps and just about constant diarrhea.  When do you have to go back to your doctor?  Everytime I ask my doctor she says to wait for six months after chemo to see if it clears up on its own (in the meantime, I suffer).  She also asks me if it seems to be getting better and, I guess it does.  I'm not crawling around on the floor barfing and wetting my pants anymore - anything was better than what I was.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

I still do have some joint pain off and on. Not bad though. Like you, in my hips and I was associating that to the excercise I'm doing. Not sure though... And, in some of my fingers too...

I see my surgeon April 1st. I saw my oncologist a couple of weeks ago. And, then I'm scheduled to see him again mid-April.

Sure hope you continue to make progress. AND, get hair on the top of your head!

Love and Hugs,

Cindi

christine8822
Posts: 38
Joined: Mar 2016

Hi, I am new to these discussion boards but thought I would chime in. Finished 6 months of chemo/radiation for stage IIIC endometrial cancer on Dec. 30.

I am feeling very good and a lot of energy now, except for weird intestinal things that come and go. Very interested to hear that many of you are having the same intestinal "burning" feelings and weird stomach issues on and off. I don't have radiation enteritis, but I certainly do feel like my intestines are not behaving normally yet. Would be interested in hearing more from others about this issue and what your doctor says about it. I swing between panicking that it's cancer returning and annoyance that it must be something I am eating. i also took some probiotics and wonder if it's making the situation worse. Thoughts? Anyone come up with a great diet post-chemo/radiiation? 

Also, I wanted to share that at 12 weeks out, it finally looks like I actually have a head of hair. It's about 3/4 of an inch long all over my head. White/gray came in first then black, finer hair, so now it is salt and pepper. A far cry from my shoulder length blonde hair I had before all of this, and I can't wait till I hit about 4 1/2 -5 months when I can color it back to something that looks like me. Still, I'm happy to have hair that seems to be coming in.

I had to laugh about a poster being delighted to find a hair growing on her chin. I feel the same about hairs on my chin, or under my arms, or on my legs, or in the pelvic area. I guess about 9 weeks the chin hair came, and in the last two weeks my eyebrows suddenly rebounded (I never lost them completely), my eyelashes are regrowing near to normal, and i all of a sudden have hair growing on the other parts of my body. Very grateful to see it as I have been bald most of the time since last August.

Would be interested in hearing from other people who are post treatment and how they cope with the fear of cancer returning and what they do if they have aches and pains - do they run to the doctor or try to soldier on alone, and what's best?

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

Hi Christine and welcome to the board!!  I'm the lady who was so happy to see one chin hair - LOL!  Now I'm back to plucking - ha ha!!  I was afraid my hair wasn't coming back since at seven weeks after my last chemo, I was still bald. I had been given Taxotere which now carries the warning that it may cause permanent hair loss - YIKES!!  However, right after that it started to come in although right about that time my left eyebrow fell off except for ONE long hair.  I kind of did a comb over and drew the rest on to look like my right eyebrow that never fell out.  Now my hair is about half an inch although there is still a bald spot about the size of a quarter next to my forehead on the top.  I also cannot wait until I can magically turn my white hair into my favored blonde.  I have four blonde wigs of various lengths so I'm well prepared when I go out into the world. Tongue Out

I only made it through three chemos and my oncologist said he never intended to do radiation (I was Stage II, Grade 3, UPSC) but I had every side effect listed except for mouth sores and death.  My liver started to malfunction and my GP stopped the chemo for fear it would result in irreversible damage to my liver.  But, I too, have continuing stomach problems.  Did you have a CT scan before or after your treatment?  When I had one, they found small pockets in my colon - diverticulosis, which can turn into diverticulitis, a very painful intestinal problem.  Mine hasn't reached that point but my GP thought that was the cause of some pain in the left side.  I also have major digestive problems - so bad that we canceled our trip to Florida.  Most days I need to be within ten feet of a bathroom after I eat.  

I know exactly what you mean about every little pain being associated with the cancer returning.  I had some spotting one morning and called my oncologist right away to move up my three month checkup.  He had his PA check me out and she found nothing although then she called me back to have me come in for the oncologist to check himself.  He also found nothing and said they'd see me in three months.  My GP put me on probiotics for my stomach but said some chemotherapy can cause permanent digestive problems (I sure hope not!!).  It's been 14 weeks since my last chemo and I don't think my stomach problems are getting any better.  As I'm typing thing I can "hear" my stomach trying to digest my half a blueberry muffin and a cup of coffee.  It's so loud, my husband has asked me what that noise is - LOL!  I've been pretty careful about avoiding real spicy foods, milk and too many raw vegetables.  I also try to not eat after 7:00 pm.  I was hospitalized during chemo for esophageal erosion and I sometimes still get some pain for that although I'm off that presciption.  

My worst left-over side effect is the neuropathy.  Did you experience that from the chemo?  I start physical therapy next week.

Let us know how you're doing.  We welcome new faces to the club that nobody wants to belong to.  There is usually somebody here who has gone through the same thing and can offer advice and encouragement.

Love,

Eldri

Gardena
Posts: 102
Joined: Jan 2016

I'm glad you found this forum, such great people here. I too was diagnosed w 111C endometrial, but unlike you, I'm still in treatment -- I have completed 6 rounds of carbo/taxol and this week I start external beam radiation coupled w low dose cisplatin. And tho I don't have any diet suggestions I want to thank you for giving a time line on your hair returning. I'm four weeks out from my last carbo/taxol infusion and the hairs on my head that remained thru treatment have gotten longer but nothing else has come in. I'm missing sections of each eyebrow and my lashes are sparse... just when I'm feeling stronger than I have since I started this journey I look the most ill!

I find out today if my cisplatin/radiation starts tomorrow or next week - either way, I'm nervous about this phase of treatment. My onco team wanted me to start this protocol 2 weeks after frontline chemo but agreed to give me more time to get my strength back - I felt like I was on a conveyor belt of treatment getting my butt kicked at every corner.  For me, chemo was painful,  but it worked (at least so far!) Any guidance, recommendations,  suggestions on the radiation process you (or anyone reading this) can give is greatly appreciated. All the best to us all~

bluehyacinth
Posts: 45
Joined: Feb 2016

I am 3CII with serous lesion, ext lympf and vasc invasion. After hysto I started with 28 rounds of rads with concurrent Cisplatin, had to skipped the last Cisplatin due to getting too emaciate, but finished the first 5. After 3 weeks off I started Doxil liposomal and Carboplatin and have one left that is postponed due to low platelets. Hope to get in this week, but amazingly they are fully booked.

Anyway you asked about recommendations. Since I had some heavy duty rads you may do much better than me, but the week after last Cisplatin was pretty bad for me with nausea and diarrhea, and none of the nausea drugs worked for me. I did find that even with nausea the worst thing was having an empty stomach, even eating a few bites actually improved the nausea, but since I had a long drive I often omitted eating as I was worried about having diarrhea on the way, but that was no good. I also did not drink enoigh while on the road fdor the same reason. But drinking a lot, addong a little lemon or something helped a lot.

I also had to rotate foods as what tasted ok one day made me throw up the next. This, hoever only lasted two weeks. If I had had someone cook for me and not having to drive so much I might not have had the same issues in other words, you may do just fine. Good luck with it and congratulatio9ns on finishing the first 6 rounds.

 

 

Gardena
Posts: 102
Joined: Jan 2016

Do you mind me asking what dose of cisplatin you were given?  I was told I would be given low dose, which normally is 40mg, but because my post chemo scan showed NED the dose I'm getting is 25mg. Apparently low doses of cisplatin boost healthy cells and makes cancer cells (in my case, microscopic if at all present) more susceptible to the radiation. When I spoke to my onco nurse she thought I would not have a reaction to the cisplatin since I made it thru the carbo/taxol wo nausea (altho post chemo treatment I am experiencing slight nausea and indigestion). She said I would more than likely have more stomach /bowel issues from the radiation - and that the radiation team and the chemo team end up pointing fingers at the other as to who is to blame

One last note, I too have adominal pains -- some are consistent and others fleeting. Scares me it's cancer brewing but I don't want to live in fear. I will mention to my Dr,  but w a clear scan, what is there to do? 

I think this forum is so awesome and I appreciate everyone who posts and shares.  I don't really talk about my dx w irl friends, so it's wonderful to have you all. Thanks for being here!

bluehyacinth
Posts: 45
Joined: Feb 2016

Hi Gardena, I don't remember my Cisplatin dose, but it is based on our weight. My dose was not lowered I am sure. I will try and remember to have someone look it up tomorrow when I am having my last chemo, I hope, my platelets were too low a week ago. Hopefully they went up this week.

 

I never lost my hair, perhaps because I was on liposomal doxirubicin rather than taxol. I guess I can still lose it if I get the last chemo. I am so tired of this cancer life, I am developing an allergy to medical personel.

ConnieSW's picture
ConnieSW
Posts: 1440
Joined: Jun 2012

that you succeed in getting that last chemo today.

bluehyacinth
Posts: 45
Joined: Feb 2016

Gardena my Cisplatin dose was 56 mg and it was based on your weight and hight (surface area).

 

Thanks Connie yes I did get my last chemo, the platelets jumped 100% in one week without doing anything but wait a week.

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Soup52
Posts: 901
Joined: Jan 2016

I am also 111c. I have just completed my 3 chemo, but I had 5 weeks of radiation external and 3 brachytherapy treatments after surgery and before chemo. In a way I think I had more problems with radiation digestive wise. I believe I altered my diet too much when I did it. I was so afraid to have fiber that I was getting hardly any. I suffered from constipation rather than diarea. Finally after getting on this board I found many people took probiotics and once I did that I found some relief along with taking stool softeners. Brachytherapy was the therapy I disliked the most and probably because my radiation oncologist lacked bedside manner in a big way, so hopefully yours will be good. Also he did not prescribe lidocaine to use before and many people had good results using it. I'm hoping yours all goes well

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Hi, Christine and welcome.  I am right with you on the weird intestinal/stomach things.  During chemo, I had intermittent pains in various places.  My chemo ended mid-December last year, and those pains gradually diminished.  Until...  right after brachytherapy at the end of February, I came down with a kidney infection.  I was prescribed Cipro and I had the same, if not more intense, kind of pains while I was on that and for a while after.  I have been off of that for a couple of weeks, but ended up on heavy doses of anti-viral for another infection which I am just finishing up.  I'm hoping after I am off all the drugs, I can get back to normal, but I suspect the intestinal/stomach issues might be something that I will just need to deal with.  I noticed a difference after surgery (more gas pains, for example), so I suspect that that will be my new "normal".

I don't know what kind of issues you are having, but I have found that most of the time, massaging the area where I have a pain gets rid of it.  I don't know if it moves gas around or stimulates the muscles to move or "uncramp" but it does seem to help.

I do take probiotics and I do feel it helps, but I did find that some probiotics made the bloating/gas worse.  You may have to try a couple of different brands to see if that makes a difference for you.

Twelve weeks out from chemo, I also have enough hair to have a "look!"  As far as other body hair, most began growing back about 5-6 weeks after chemo, same as my head hair, and my brows and eyelashes seem to be thicker than they were before.  That last of the body hair to make an appearance was under my arms, and that has just started to grow in the last week or so.

As I am just 3 1/2 weeks out of treatment and have not had a follow-up scan yet, I am a little anxious about all of these little pains that pop up and I'm looking forward to a scan that confirms these are just some sort of weird digestive thing as there does seem to be a connection between the pains/gas and eating.  Maybe too many cruciferous vegetables!

Chris

 

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

Well I will have my last treatments this coming Wed. Thurs. Fri. and was wondering when things start growing again.  Hopefully I will be able to have my treatments as I have a sinus infection but it is getting better each day.  Guess we will see when I get to the clinic after blood test. I had read somewhere can't remember where(due to chemo brain) that it takes 5 weeks for your body to be rid of the chemo drugs.  So many times I have had a pain in my body since finding out about the cancer and the first thought that comes to mind is that darn cancer growing some place else.  

Thanks again Chris for the timeline. Will let you know after last treatment what body timeline I have.

Jerri  

Soup52's picture
Soup52
Posts: 901
Joined: Jan 2016

I'm still in the thick of treatment, only having two chemo so far. My next one is Monday. Someone asked about radiation. I had my radiation before chemo. 5 weeks of external and then 3 brachytherapy . Yes, it gave me stomach issues as chemo continues with some of that too. Though this week is pretty good. I'm looking for a return of it next week though. So far I have not had any problem with food tasting weird, but I will say my weigh fluxuates greatly, like by about 5 pounds either way last week. Has anyone else had that?

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EZLiving66
Posts: 1344
Joined: Oct 2015

I had the same thing with the weight, Soup.  It kind of depended on the diarhhea and if I could eat.  I know I was dehydrated because my fingers would get all pruny.  Then, all of a sudden my fingers would swell up and my ring which was falling off two days before would be stuck on.  My feet and ankles would swell too and then look all bony - five or six pounds of fluid up and down.  It took awhile after I was off chemo for it to stop.  My GP thought part of it was my liver problems and low magnesium.

Good luck on your chemo on Monday!!

Love,

Eldri

christine8822
Posts: 38
Joined: Mar 2016

Hi, thanks so much to all for the posts. I think we have safely established that chemo and radiation do funny things to your digestive system. I love the poster's comment that " the radiation team and the chemo team end up pointing fingers at the other as to who is to blame". 

Yesterday I happened to be driving near the cancer center where I had my treatment. I was thinking about what I'd posted here and so I just drove into the parking lot and went up to my oncolgist's office. He's not there on Mondays but his nurse is, and nobody else was there. We had a long talk. She told me that many endometrial cancer survivors have adhesions inside the colon and small intestines caused by the radiation. This causes weird intestinal issues that come and go or get better or worse, or cause pains various spots, but especially in the area where you had the radiation, in my case, on the right side.  She took my hands and said, look, you can do this. just keep a journal of what you eat and how you feel and work with it, and you will be ok. try not to worry that every pain is cancer."

So I just wanted to pass that along. In addition to the 6 rounds of taxol/carbo July-December, I had the five weeks of radiation M-F, for a total of 25 doses, and it was strong - strong enough to kill the cancer in the lymph nodes I hope. Maybe digestive issues are a small price to pay for being healed. 

Good luck to us all. Would love to hear any more stories about hair (ok, i'm shallow, so sue me) and when you lost what I call the "haunted" look in your eyes and face. I think that is starting to fade 12 weeks out, but i'm not positive. I feel like I've aged about 50 years since being diagnosed.  

 

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TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

I am 13 weeks out from my last chemo. I always referred to my chemo look - no eyebrows, lashes or head hair as looking like ET. I do have my lashes and brows back. They aren't their normal length yet but at least the ET look is gone. And, they are not very dark yet either.  My hair is completely covering my scalp now. It came back in white and black. So far, it is about 1/2 an inch long (or less). So, still waiting for it to get long enough to look like I'm a female. I agree, this does age us. But, hopefully our bodies will bounce back to our pre-cancer look. And, if not... at least give us our health back!  I did not have the external radiation, only the brachytherapy. So, I don't have experience with the impacts. I can tell you though, that I still do get strange pains in my stomach and vaginal area once in a while. I'm still building my strength and have good days most of the time with a few days thrown in where I just don't feel like doing much. So, I rest a lot on those days...  Neuropothy continues to be an issue in my feet and legs. And, hit harder about 2 months after I finished chemo.

My sister got me a FitBit for my birthday. Just started using it 3 days ago. It has been fun to see how much activity I do in a day. And, to my surprise, I am more active than I thought I was. I think it is going to be a good motivator to keep me moving. Kind of like having a contest all by yourself. lol

Like you, I'm looking forward to having my hair back. Still waiting to see if it is going to be curly. It was stick straight and blonde before chemo.

Love and Hugs,

Cindi

Donswife48
Posts: 293
Joined: Nov 2015

I smiled when I read that in your post.  I was sitting waiting for my lunch at Panera last week, the server came from behind me and said "your lunch sir", and then quickly looked embarrassed when he saw I was a "ma'am".  I just smiled and thanked him.  I know I could wear makeup, usually my clothes are pretty female, but the back of the head is definately not girly.  Hugs Nancy

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TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

Nancy, I wish I was brave enough to go without covering my head like you and others do! I was able to do that walking my boys down the street. That was major for me. But, still haven't convinced myself to go to the store or beyond my street yet. I wear more makeup now than I did before chemo. Got used to putting eye liner on to compensate for the bald eye look! And, I just feel better about myself taking the time to do it.

I went to the dentist today and had to take my baseball cap off because it was in the way. (This cap has hair attached to it...)  And, it didn't bother me to do so. Maybe I'm getting closer to a new reveal?! lol

Anyway, I'm happy to be alive, feeling pretty darn good and learning who I am in this new world of mine.

Love and Hugs,

Cindi

christine8822
Posts: 38
Joined: Mar 2016

Wonder if anyone had genetic testing for Lynch Syndrome. Doc wants me to have. It seems genetic testing is the new thing with endometrial cancer diagnosis, espeically if tumor analysis shows any kind of "mismatch repair" issue.

Also, 12 weeks out I still have neuropathy in feet and ankles, not hands, wondering if it fades with time.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 803
Joined: Feb 2016

I know my doctor did mention that they will test my tumor for Lynch syndrome.  I had wanted it tested more extensively also but at the very least, they do test for Lynch. 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I am being tested for Lynch Syndrome, and depending on the results,  possibly more extensive testing. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

I was tested for Lynch prior to knowing I had cancer. My sister has Lynch so there was a 50/50 chance I would too. And I have it too, darn it!

No one has suggested that I have any additional genetic testing.  However, I do have to have more screening than "normal" people. Like colonoscopies every 2-3 years and annual skin reviews. We go into a higher bracket of multiple cancer types with Lynch. Uterine, Ovarian, Thyroid, Pancreatic and Colon. I may have missed a few. Doesn't mean we will get them. However, my sister has had Thyroid, Uterine an Pancreatic cancer. All caught early and she has not had to do chemo. She is on 3 month scans - they are doing MRIs now to limit her radiation exposure.  She had her thyroid and half her pancreas removed along with a radical hysterectomy.  So far, she is doing well.

I hope they find a cure for all of us using our genetic make up sooner than later!

Christine - the neuropothy in my feet is still really bad. I'm 13 weeks out. I see my surgeon on April 1st and plan to ask him about that. My legs still hurt too, but my feet are way worse....

Love and Hugs,

Cindi

Donswife48
Posts: 293
Joined: Nov 2015

They ran additional analysis on the tumor and it didn't show any mismatch repair issues so they ruled out Lynch Syndrome.  I will have my last chemo next week, but #5 they skipped the taxol because the doctor thought my feet were too bad.  They have improved slightly since 3 weeks ago, but the fingertips still are pretty prickly.  Hugs Nancy

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EZLiving66
Posts: 1344
Joined: Oct 2015

Since there was very little cancer in my family, my doctor said I did not meet the criteria to be tested.  

I'm 3 1/2 months past chemo and I think the neuropathy is getting WORSE.  For the first time in weeks, I had to take Peroset during the night.  It felt like somebody was sticking dull needles into my legs and my feet were on fire.  My toes and most of my fingers are still pretty numb and my balance is still off.  I start physical therapy on Tuesday and I am hoping it helps - I call myself a chemo cripple.

Love,

Eldri

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