Ladies going through chemo - how are you doing? Or those just starting or curious

EZLiving66

cindy0519 said:

Half way point achieved!!!

I am offically half way through!   Last Wednesday was a delayed round 3 but round three non the less!!  Round two was riddled with side effects for me - bone pain, the appearance of neuropathy in my fingers and feet (even the bottoms of my feet ), no energy!, and a bad case of Bronchitis that looked to be head toward pneumonia.  An big antibotic cylce and a week to get through the antibotics and I was ready to tackle cycle 3 last Wed. 

Cycle 3's side effects have been much lighter than cycle 2. Not sure if the Bronchitis amplified things or what but I am thrilled the side effects are not as bad.  I have even been able to get to the gym and run a couple times.  Ran two miles last night...was aiming for a 5k (3.2) but a idiot with way more cologne than any one man should wear came in and hopped on a treadmill one down from mine.  Run done! The smell made me so neauseous that depsite trying my best to push through it I had to quite at 2.0 miles.  I should have puked on this shoes, it made me so mad.  Then another colgne overdose case followed me out of the gym.  I had to sit in my car, heat blarring, windows down to get some fresh air to feel up to driving home.

You all are such an inspiration to me.  Thanks for sharing all that you have and are going through.  It is so VERY helpful!

Wow, I am impressed!  After

Wow, I am impressed!  After my third chemo I was lucky I could walk to the bathroom from my bed....maybe five steps.  Many times, I crawled.  It will be six weeks on Tuesday and I'm still walking with a cane because of the nerve damage in my feet.

Good luck on the rest of your chemo.  There are women on here who worked right through their chemo.  I cannot imagine doing that LOL!

 

Love,

Eldri

Editgrl

cindy0519 said:

Half way point achieved!!!

I am offically half way through!   Last Wednesday was a delayed round 3 but round three non the less!!  Round two was riddled with side effects for me - bone pain, the appearance of neuropathy in my fingers and feet (even the bottoms of my feet ), no energy!, and a bad case of Bronchitis that looked to be head toward pneumonia.  An big antibotic cylce and a week to get through the antibotics and I was ready to tackle cycle 3 last Wed. 

Cycle 3's side effects have been much lighter than cycle 2. Not sure if the Bronchitis amplified things or what but I am thrilled the side effects are not as bad.  I have even been able to get to the gym and run a couple times.  Ran two miles last night...was aiming for a 5k (3.2) but a idiot with way more cologne than any one man should wear came in and hopped on a treadmill one down from mine.  Run done! The smell made me so neauseous that depsite trying my best to push through it I had to quite at 2.0 miles.  I should have puked on this shoes, it made me so mad.  Then another colgne overdose case followed me out of the gym.  I had to sit in my car, heat blarring, windows down to get some fresh air to feel up to driving home.

You all are such an inspiration to me.  Thanks for sharing all that you have and are going through.  It is so VERY helpful!

You're doing great!

I do think the bronchitis may have played a role in all of the side effects after round 2.  The fact that you are able to exercise now is fantastic.  It helped me keep a grip on "normal" during chemo.

And you're halfway done.  You got this, girl!

Chris

beccabtown

Post-chemo day 1, chemo round 1

Someone recommended this thread to me, so I thought I'd post here. I had my first round of Carbo/Taxol chemo yesterday, and it seems to have gone well. Port worked fine. The only effects I've had so far have been restless legs (pretty bad), some pain on the soles of my feet (but not really tingling or numbness), and slight nausea this morning. I'm taking my Zofran religiously as a preventive measure.

If anyone has any suggestions re the restless legs, I'd really appreciate hearing them. I've always had a bit of this but have never done anything other than elevate them when they're bothering me.

My background: I was diagnosed with endometrial cancer in April of this year after postmenopausal bleeding. I had a TAH in May. The diagnosis is Stage IIIc2, Grade 3 endometrial cancer, mixed endometrioid and serous type. Quite a few lymph nodes in the area were positive, as was the pelvic wash.  I will have six rounds of Carboplatin & Paclitaxel, plus both external radiation and HDR brachytherapy, in a "sandwich" regimen: 3 rounds of chemo, then 5-7 weeks of radiation, followed by 3 more rounds of chemo. I was very relieved yesterday to learn that the PET scan I had last week showed no cancer anywhere that we weren't already aware of.

Best to all of you.

CheeseQueen57

Week 9 out of 18

I'm on week 9 out of 18 of a Taxel/Carbo regime for Stage IIIc2, Grade 3 endometriod cancer. This will be followed by both external and internal radiation. Had surgery March 17. Limited side effects. I lost most hair at about 4th week but still have some scraggly hair on my head. I take Miralax the evening before and for 3 days after to prevent constipation and I take 2 stool softeners every day, drink lots of water and eat lots of fiber. If I don't drink sufficient water, I get burning urination but drinking enough prevents. I do have minimal numbness in my toes but get weekly acupuncture which I believe is helping. I do get heartburn but take 2 Prilosec a day and chew tums. Gas-x after every meal helps with the chemo farts which believe me could kill those around you!  I'm using Replens for vaginal dryness every 3 days which has done the trick if you plan to be sexually active. I too take my Zofran religiously and for some reason on the last 2 days before chemo I require the Compazine too. But that hits the nausea. On the first couple days after chemo my taste perception is really off, but I force myself to eat. I've lost 18 pounds but weight seems stable now. All in all, this has not been as bad as I anticipated. I am tired but I rest. I continue to get out with friends and my husband, travel to our shore house every week, get out on our boat (I allow myself one alcoholic drink/week), bake muffins  my infusion staff and generally enjoy life. Oh, I also do a guided imagery exercise every morning, take a 2-3 mile walk when feeling well, and go to yoga when I can. You've got this. Keep the right attitude, deal with the side effects as they arise. And move on. Oh, my migraine visual auras have reappeared. Getting them now about once a week. Just something to tolerate for now. Hope this long recitation helps someone. 

janaes

CheeseQueen57 said:

Week 9 out of 18

I'm on week 9 out of 18 of a Taxel/Carbo regime for Stage IIIc2, Grade 3 endometriod cancer. This will be followed by both external and internal radiation. Had surgery March 17. Limited side effects. I lost most hair at about 4th week but still have some scraggly hair on my head. I take Miralax the evening before and for 3 days after to prevent constipation and I take 2 stool softeners every day, drink lots of water and eat lots of fiber. If I don't drink sufficient water, I get burning urination but drinking enough prevents. I do have minimal numbness in my toes but get weekly acupuncture which I believe is helping. I do get heartburn but take 2 Prilosec a day and chew tums. Gas-x after every meal helps with the chemo farts which believe me could kill those around you!  I'm using Replens for vaginal dryness every 3 days which has done the trick if you plan to be sexually active. I too take my Zofran religiously and for some reason on the last 2 days before chemo I require the Compazine too. But that hits the nausea. On the first couple days after chemo my taste perception is really off, but I force myself to eat. I've lost 18 pounds but weight seems stable now. All in all, this has not been as bad as I anticipated. I am tired but I rest. I continue to get out with friends and my husband, travel to our shore house every week, get out on our boat (I allow myself one alcoholic drink/week), bake muffins  my infusion staff and generally enjoy life. Oh, I also do a guided imagery exercise every morning, take a 2-3 mile walk when feeling well, and go to yoga when I can. You've got this. Keep the right attitude, deal with the side effects as they arise. And move on. Oh, my migraine visual auras have reappeared. Getting them now about once a week. Just something to tolerate for now. Hope this long recitation helps someone. 

I am a week and two days from

I am a week and two days from my first chemo treatment.  Feeling pretty good.  I still have some neuropathy in my fingers.  I doesnt hurt but it sure does bug me a bunch.  I was diagnosed with carcinasarcoma stage 2 grade 3.  This was the diagnosis when they found the cancer right after my biopsy in April.  Although it was diagnoced differently by one doctor after my hysterectamy, there was a tumor board about my cancer and all those in the board and the three patholigist who studiied both the specimine found during the biopsy, and the cancer taken out at the time surgery, agree that even though the carcinasarcoma was  not as bad as origanally thought, It was best to treat as that kind of cancer. Im hopping my neuropathy dooesnt get worse neither with my bone pain that was present especially day 2-5.  I dont like taking medicine too much so when the nurse recomended i take claritan i went and bought it but never took it and just lived with it.  I dont know for sure what Im going to do for next treatment but if it get worse I might have to try the clariton.  So there is my update.  I know how much others experiences have helped me so I tohope this can help some one some day.

TeddyandBears_Mom

Janaes

So glad you made it through your first treatment! I was like you.... didn't want to take meds. However, I learned that it is much better to take them, then suffer through the side effects. I promise, you will get back to normal on the medication front once you finish your treatments. In the meantime, please consider using everything needed to keep you comfortable. It really will make a huge difference in your journey.  Also, try to walk every day. I was able to do that for the first few treatments but then had to take a couple of days off during the worst days going forward. Some ladies were able to stay active the entire time. I hope that is the case for you!

Thanks for documenting. I do believe it will help the next warrior that comes along.

Love and Hugs,

Cindi

beccabtown

Hit by a truck

After 48 hours of only light effects following my first chemo on Tuesday, I was suddenly overtaken by pain in every part of my body. (Moving around a bit, and sometimes easing for a while but never going away.) That's been going on for about six hours now. Is this what it's like? 

What's confusing is that a couple of hours before it started I'd taken an Acyclovir (to try to avoid a shingles recurrence). But I took that for a few days in the hospital with no problems, and nothing I've read says anything about this kind of side effect. 

Any thoughts welcome. 

brissance

beccabtown said:

Hit by a truck

After 48 hours of only light effects following my first chemo on Tuesday, I was suddenly overtaken by pain in every part of my body. (Moving around a bit, and sometimes easing for a while but never going away.) That's been going on for about six hours now. Is this what it's like? 

What's confusing is that a couple of hours before it started I'd taken an Acyclovir (to try to avoid a shingles recurrence). But I took that for a few days in the hospital with no problems, and nothing I've read says anything about this kind of side effect. 

Any thoughts welcome. 

Pain after Chemo

Becca, I have not had this experience but it would worry me if I had.  If I were you I would call my oncologist... my oncologist has a 24 on call physician.  Run it by them.  Don't just let yourself suffer.  That is counter-productive.  Hang in there and I am terribly sorry you are feeling so miserable.  Prayers for you.

Editgrl

beccabtown said:

Hit by a truck

After 48 hours of only light effects following my first chemo on Tuesday, I was suddenly overtaken by pain in every part of my body. (Moving around a bit, and sometimes easing for a while but never going away.) That's been going on for about six hours now. Is this what it's like? 

What's confusing is that a couple of hours before it started I'd taken an Acyclovir (to try to avoid a shingles recurrence). But I took that for a few days in the hospital with no problems, and nothing I've read says anything about this kind of side effect. 

Any thoughts welcome. 

Acyclovir

Becca, I took acyclovir during chemo as a prophylactic against shingles since I had not had the vaccine before chemo, and my oncologist recommended it.  I did not have any issues taking it and certainly not the kind of pain you are experiencing.  I agree with Brissance...  call the oncology department and run it by them.

Soup52

beccabtown said:

Hit by a truck

After 48 hours of only light effects following my first chemo on Tuesday, I was suddenly overtaken by pain in every part of my body. (Moving around a bit, and sometimes easing for a while but never going away.) That's been going on for about six hours now. Is this what it's like? 

What's confusing is that a couple of hours before it started I'd taken an Acyclovir (to try to avoid a shingles recurrence). But I took that for a few days in the hospital with no problems, and nothing I've read says anything about this kind of side effect. 

Any thoughts welcome. 

After my first chemo I had a

After my first chemo I had a similar reaction after a couple of days. Mine was extreme pain in my knees and legs. When I contacted the nurse at my cancer center, I was told it probably would be the worst the first chemo and that held to be true. Also, I hadn't known about the Claritin until after the first time and I was sure to use it ever after.

Lou Ann M

Pain after chemo

I always had about 48hours after chemo before the side effects kick in.  I first thought that the pain was from the Nuelasta shot but mine turned out to be from the Taxol. I took one Oxicodone at night so that I could sleep and i aways took Clarite.  It can last a few days constipation fatigue and no appitite also hit about the same time.  Then things got a lot better.  For me everything was about the same after each round of chemo. Just about like clock work.  

You are strong you will make it through this.  Hugs and prayers, Lou Ann

beccabtown

Thanks for all the comments.

Thanks for all the comments.  I spoke to my onc's nurse and she said to keep up with the fluids and take Tylenol or Ibuprofen. I hoped for more advice but at least the symptoms I was describing didn't trigger any alarms. 

Unknown

Me too!

I had shooting pain in my legs about 1-2 days after chemo.  There were days when I litterly thought I couldn't do this anymore, then the pain worked it's way day my legs, into my feet, then out.  The only thing that helped a little was a really soft bed to sink into, and walking around the couch or up and down the hall.  If I kept moving, the pain didn't settle in until I stopped!  I finally took a leftover pain pill (from my surgery) and slept for a few hours.  It will get better, just keep posting and let us keep reassuring you.  Hugs Nancy

Kvdyson

beccabtown said:

Hit by a truck

After 48 hours of only light effects following my first chemo on Tuesday, I was suddenly overtaken by pain in every part of my body. (Moving around a bit, and sometimes easing for a while but never going away.) That's been going on for about six hours now. Is this what it's like? 

What's confusing is that a couple of hours before it started I'd taken an Acyclovir (to try to avoid a shingles recurrence). But I took that for a few days in the hospital with no problems, and nothing I've read says anything about this kind of side effect. 

Any thoughts welcome. 

Becca, did you receive a Neulasta or

Becca, did you receive a Neulasta or Neupogen shot after chemo? If so, it may be related to that.

The first Neulasta shot I received caused intense pain in my jawbone a few days after it was administered. I called my gyn-onc's office and they advised me to take a pain pill that was left over from my surgery every 4 - 6 hours. After that first time, the shots never caused as much pain and I was able to manage with just Advil (and a daily Claritin which I was taking anyway). 

Please let us know how you are doing! Kim

beccabtown

Update

Thanks so much to everyone who has posted about their experiences. I took two Benadryl last night and that did not seem to help the leg and foot pain immediately, but I did eventually go to sleep and felt better when I woke up. Kind of like someone flicked a switch--just the way the pain started two days ago. Can't wait to see what comes next! I hope all of you are having a good Saturday. 

Unknown

beccabtown said:

Update

Thanks so much to everyone who has posted about their experiences. I took two Benadryl last night and that did not seem to help the leg and foot pain immediately, but I did eventually go to sleep and felt better when I woke up. Kind of like someone flicked a switch--just the way the pain started two days ago. Can't wait to see what comes next! I hope all of you are having a good Saturday. 

Light switch describes it.

Exactly right, I found if I could get some sleep, it did seem like I felt much better the next day.  I tried to keep telling myself each treatment that it would get better in a day or two (OK  maybe longer), but it did get better.  My doctor lowered my doses, but it didn't do much for the pain.  He skipped taxol on treatment 5 because of my neuropathy and surprisingly when I had it for dose 6 it didn't affect me nearly as much.  And you're right, Ibuprofen diid nothing to stop this kind of pain, although it works well on my joint pain.  I would suspect it might help with bone pain also.  Hugs, Nancy

MAbound

Peripheral Neuropathy Pain

Hi, since this is just my 2^nd post, a little info about me: Abdominal radical hysterectomy April 22. Staging set as 3a, grade 3 for endometrial adenocarcinoma with 30% myometrial uterine wall penetration, extensive cervical involvement and cancer cells found in both fallopian tubes, the right ovary, and 1 positive lymph node on each side, which my oncologist says is read as being lymph node negative. My Omentum, para-aortic lymph nodes, and pelvic washing (cytology) were all negative. My treatment plan is for 6 cycles of Taxol/Carboplatin every 3 weeks followed by 5 ½ weeks radiation and then progesterone therapy for the rest of my life. 

Tomorrow is my 3^rd chemo treatment, but the Taxol got switched to Taxotere because I developed intense peripheral neuropathy 48 hours after the infusion. Like some of you have noted elsewhere, the pain seems to be worse at night when lying down and trying to fall asleep. I received the suggestion to try Claritin when I called the oncology nurse, but that did nothing for me as did taking Ibuprofen.  The numbness & tingling during the day wasn’t an issue, but the burning at night was pretty unbearable, so I started looking into this on the internet and found a few things I wish I had known prior to starting chemo…like when I was recovering from surgery in the hospital!

A week before my 1^st chemo, I was told to start taking a B complex supplement as a means of trying to prevent neuropathy. I wasn’t given specifics regarding which brand or doses to look for, so while researching about this and my CIPN (chemo-induced peripheral neuropathy) I found out that besides B12 being important to nerve function, many chemo drugs render almost 80% of it into an inert form and that the test for your B12 level counts both inert and active B12 for the final result. A normal level does not necessarily mean you have enough active B12. I asked my oncologist about it and he sent me to my primary dr. about it. 4 days after I got a shot and started taking 1000 mcgs sublingually, my neuropathy was greatly abated. I’ll be returning for shots every month.

I also found out about using hypothermia mittens and slippers during treatments. They are just like the ice caps for saving your hair (which I didn’t know about until it was too late after my 1^st chemo). I used them for my second chemo treatment with Taxotere because that is similar to Taxol and can also cause issues with your nails. My neuropathy did intensify with this treatment from what it was after the B12 shot, but nowhere near as bad as before. Still, the discomfort is always bad enough at night when I lay down and I am happy to say that the slippers work for stopping that, too, so that I can fall and stay asleep through the night. It’s much better than having to take more drugs with more side effects to deal with. I found them on Amazon and needed to buy 4 pairs each to get through the infusion times for both the Taxol and Carboplatin. They are about $100/pair on Amazon. It’s a lot, I know, but it’s been worth it to me for both the pain relief and keeping the cumulative neuropathy effects of the chemo at bay.

Finally, I started taking glutamine powder (15g 2x/day) with my oncologist’s ok after finding out that cancer, surgery, and chemo produce a state of glutamine deficiency which in turn decrease normal cell tolerance of chemo side effects. It’s an amino acid that body builders tend to take that some studies are now showing may protect the myelin sheath that covers nerves, increases tumor cell susceptibility to chemo treatments, and aids healing of rapidly dividing mucosal epithelial cells such as those in the mouth and digestive tract, as well as aids blood sugar control. There’s really no outward way I can know if this is helping, but it’s safe to take during chemo and does no harm from what I’ve read online, it’s just that studies are at the stage where results are promising, but further studies need to be done.

Hope this helps anyone interested. Sorry the post got so long!

 

TeddyandBears_Mom

MABound, thanks for the great

MABound, thanks for the great post! I am finished with chemo (hopefully for the rest of my life) but my cousin will be starting hers in a few weeks. I plan to share this with her. I hope you continue to get great results with this and sail through the rest of your chemo treatments.

Love and Hugs,

Cindi

Jacjac2

Chemo done, now two a day radiation

Chemo did not get rid of all cancer. Sill have a 2" on a muscle and two 1"  tumors on my liver chemo was rough for about a week, and weak for a week. Once you feel good time to do again.  So my next step is external radiation two times a day for 5 weeks.  However I have not had the final meeting on times. Doc is not saying we will get it all with radiation but hope to shrink them some.  Anyone ever had the two a day radiation. Oh and 9am on Letrozole. I am ready to be thru with treatments of any kind. I live 4 states from my family, my mom in poor health and can not go see her.  I have to drive cause tickets to fly are out of my pocket range. I miss her.   As a teachers my break is still dealing with this illness sorry I rambled

Unknown

MAbound said:

Peripheral Neuropathy Pain

Hi, since this is just my 2^nd post, a little info about me: Abdominal radical hysterectomy April 22. Staging set as 3a, grade 3 for endometrial adenocarcinoma with 30% myometrial uterine wall penetration, extensive cervical involvement and cancer cells found in both fallopian tubes, the right ovary, and 1 positive lymph node on each side, which my oncologist says is read as being lymph node negative. My Omentum, para-aortic lymph nodes, and pelvic washing (cytology) were all negative. My treatment plan is for 6 cycles of Taxol/Carboplatin every 3 weeks followed by 5 ½ weeks radiation and then progesterone therapy for the rest of my life. 

Tomorrow is my 3^rd chemo treatment, but the Taxol got switched to Taxotere because I developed intense peripheral neuropathy 48 hours after the infusion. Like some of you have noted elsewhere, the pain seems to be worse at night when lying down and trying to fall asleep. I received the suggestion to try Claritin when I called the oncology nurse, but that did nothing for me as did taking Ibuprofen.  The numbness & tingling during the day wasn’t an issue, but the burning at night was pretty unbearable, so I started looking into this on the internet and found a few things I wish I had known prior to starting chemo…like when I was recovering from surgery in the hospital!

A week before my 1^st chemo, I was told to start taking a B complex supplement as a means of trying to prevent neuropathy. I wasn’t given specifics regarding which brand or doses to look for, so while researching about this and my CIPN (chemo-induced peripheral neuropathy) I found out that besides B12 being important to nerve function, many chemo drugs render almost 80% of it into an inert form and that the test for your B12 level counts both inert and active B12 for the final result. A normal level does not necessarily mean you have enough active B12. I asked my oncologist about it and he sent me to my primary dr. about it. 4 days after I got a shot and started taking 1000 mcgs sublingually, my neuropathy was greatly abated. I’ll be returning for shots every month.

I also found out about using hypothermia mittens and slippers during treatments. They are just like the ice caps for saving your hair (which I didn’t know about until it was too late after my 1^st chemo). I used them for my second chemo treatment with Taxotere because that is similar to Taxol and can also cause issues with your nails. My neuropathy did intensify with this treatment from what it was after the B12 shot, but nowhere near as bad as before. Still, the discomfort is always bad enough at night when I lay down and I am happy to say that the slippers work for stopping that, too, so that I can fall and stay asleep through the night. It’s much better than having to take more drugs with more side effects to deal with. I found them on Amazon and needed to buy 4 pairs each to get through the infusion times for both the Taxol and Carboplatin. They are about $100/pair on Amazon. It’s a lot, I know, but it’s been worth it to me for both the pain relief and keeping the cumulative neuropathy effects of the chemo at bay.

Finally, I started taking glutamine powder (15g 2x/day) with my oncologist’s ok after finding out that cancer, surgery, and chemo produce a state of glutamine deficiency which in turn decrease normal cell tolerance of chemo side effects. It’s an amino acid that body builders tend to take that some studies are now showing may protect the myelin sheath that covers nerves, increases tumor cell susceptibility to chemo treatments, and aids healing of rapidly dividing mucosal epithelial cells such as those in the mouth and digestive tract, as well as aids blood sugar control. There’s really no outward way I can know if this is helping, but it’s safe to take during chemo and does no harm from what I’ve read online, it’s just that studies are at the stage where results are promising, but further studies need to be done.

Hope this helps anyone interested. Sorry the post got so long!

 

Ladies, be careful about glutamine and suppliements without drs

This is a subject that is either good or bad from all that I've read.  Medical glutamine (pure, not what the body builders use) has been prescribed for some for neupropathy, however, studies have shown it can interfer with your chemo and actually cause the chemo to be not as effective.  I asked my doctor and he said no.  I would say if your doctor prescribes it, then go for it, but don't self prescribe anything without checking with your doctor first.  I also was OK'd to use vitamin B12 but it did nothing to help with my neuropathy.  In fact my doctor skipped taxol on chemo number five because of my neuropathy.