Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Please feel free to read, share your thoughts, your stories and connect with others!
lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby lakeswim » Wed May 02, 2018 9:53 am

Thank you. I have reached out to my PCP for an audiologist referral. My oncologist mentioned nothing about the hearing aspect.

Pray tell - what are the female anatomy side effects from radiation?

Thank you.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby heiders33 » Wed May 02, 2018 5:31 pm

lakeswim wrote:
Pray tell - what are the female anatomy side effects from radiation?

Thank you.


For me, I went into chemo/radiation-induced menopause a few weeks into treatment. I am still peri-menopausal and am coming up on one year with no period, which would make me fully menopausal. Some women do get their periods back, however. My ovarian function shut down and an ovarian cyst formed from hormonal imbalance, which has since gone away (I found out today). During and right after radiation, my lining was very sensitive and thin. During adjuvant (post-surgery) chemo I developed hot flashes which continued until I was done with chemo and was able get on hormone replacement therapy a few weeks ago. The hot flashes are gradually going away.

So in other words, a lot can happen! And it was a lot for me to take in, especially at age 35. But we do what we need to do to stay alive.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby weisssoccermom » Wed May 02, 2018 7:46 pm

This is my pet peeve. Most rad oncs will tell you that you likely will go into menopause due to radiation....that's pretty much a given (although my ovaries must be just outside of the radiation field...because I did NOT enter into menopause.) What the rad oncs and most oncs don't bother to mention is that your vaginal canal not only becomes very dry but the tissue becomes very thin AND the worst part, most women have a lot of adhesions/scarring in the vaginal canal....pretty much making sexual intercourse/even PAP smears very painfulor just plain impossible. I had the worst buffoon for a rad onc....at least initially - changed rad oncs.....BUT he did warn me about these side effects and told me ways to avoid it. I have to say, no matter how crass he was, his advice was very welcome. Unfortunately, most rad oncs don't discuss this with female patients and instead, tell them that they'll deal with the problems LONG after radiation, surgery and adjuvant chemo. By then, the damage is done and it is very hard, if not impossible to fix it. The solution is to use dilators to attempt to 'stretch' the scar tissue but it is a painful process that often doesn't truly work. What's even more infuriating is that when a female has certain other cancers that also require pelvic radiation (sometimes cervical, endometrial, etc.) gyn oncs DO tell their patients about these side effects. So the question is WHY NOT FOR RECTAL CANCER??
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby NHMike » Wed May 02, 2018 7:54 pm

There can be side-effects for men as well in surgery and recovery. My surgeon mentioned them to me in the planning session though I was more concerned with survival. I mentioned the problem after recovering from surgery and she explained what it was. I'm not terribly concerned about it now but will look into fixing it some time after surgery. The surgery is complicated and I suspect that my problem was with the ureter stents which appear to be standard practice with this kind of surgery and I imagine that they do them with men as well as women and stuff in the area can get irritated.

But the goal is to survive, avoid recurrence and minimize loss of function afterwards.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby weisssoccermom » Wed May 02, 2018 8:41 pm

I am not saying that a female shouldn't go through radiation/surgery BUT, as I said, there are ways to minimize or even avoid the radiation side effects and they just aren't discussed at all with women. Most rad oncs don't even bother to tell women about the very real and very painful sexual side effects that are almost certainly bound to occur. At the very least, women should be informed about ALL the side effects...from menopause to vaginal stenosis....to bladder irritation, etc. and told about ways to avoid them. It's difficult enough to have this whole cancer diagnosis thrown at you but then to have your hormones go all whacky on you and not have anyone want to do anything about it to then long after surgery/adjuvant chemo....when a patient wants to just 'start over' and live their life again.....they find that a major part of their life has totally changed and no one bothered to even talk to them about it....that's just WRONG! As I said, I'm VERY fortunate that I had a pompous jerk for my first rad onc who warned me about the side effects and winked at my hubs and told us to have sex during radiation to help avoid the vaginal stenosis issue. I was also very fortunate to be referred to a onc who specialized in GYN cancers who gave me a hormonal cream that alleviated many of the other problems that are often associated with radiation. Unfortunately, too many rad oncs don't give most female rectal cancer patients the pertinent information regarding the side effects. I was flat out told (and others over the years have said they also heard the same thing...long after the fact) that rad oncs don't routinely tell female patients about the vaginal stenosis thinking that if they did, female patients might not have the radiation. Seriously? That's a bunch of BS!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby lakeswim » Thu May 03, 2018 3:00 pm

weisssoccermom wrote:This is my pet peeve. Most rad oncs will tell you that you likely will go into menopause due to radiation....that's pretty much a given (although my ovaries must be just outside of the radiation field...because I did NOT enter into menopause.) What the rad oncs and most oncs don't bother to mention is that your vaginal canal not only becomes very dry but the tissue becomes very thin AND the worst part, most women have a lot of adhesions/scarring in the vaginal canal....pretty much making sexual intercourse/even PAP smears very painfulor just plain impossible. I had the worst buffoon for a rad onc....at least initially - changed rad oncs.....BUT he did warn me about these side effects and told me ways to avoid it. I have to say, no matter how crass he was, his advice was very welcome. Unfortunately, most rad oncs don't discuss this with female patients and instead, tell them that they'll deal with the problems LONG after radiation, surgery and adjuvant chemo. By then, the damage is done and it is very hard, if not impossible to fix it. The solution is to use dilators to attempt to 'stretch' the scar tissue but it is a painful process that often doesn't truly work. What's even more infuriating is that when a female has certain other cancers that also require pelvic radiation (sometimes cervical, endometrial, etc.) gyn oncs DO tell their patients about these side effects. So the question is WHY NOT FOR RECTAL CANCER??


THIS! This is why I am here - for info they're not telling me. Thank you SO much for this. What do you suggest - ask to speak to a rad onc who specializes in GYN issues (TOO)? Thank you.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby Caat55 » Thu May 03, 2018 3:41 pm

lakeswim wrote:Thank you. I have reached out to my PCP for an audiologist referral. My oncologist mentioned nothing about the hearing aspect.

Pray tell - what are the female anatomy side effects from radiation?

Thank you.

Menopause hard and fast. Hot flashes. Also I had some pretty sever burns on butt checks. Lose of skin elasticity. All the skin down there is raw.

S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby weisssoccermom » Thu May 03, 2018 6:30 pm

There's so much that doesn't show up for a good 9+ months. End of radiation....figure an 8 week wait until surgery. Then surgery and a 4-6 week wait until the beginning of adjuvant chemoradiation. That phase usually lasts a good 6-7 months (or longer...count on the fact that although adjuvant chemo may only be scheduled for 6 months, it is not uncommon for delays....low blood counts, being sick, etc.) 8 weeks + 4 (6) weeks + 6-7 months = 9-11 months until a patient is finished. USUALLY (not saying always) the whole idea of sex or getting a GYN checkup doesn't even enter your mind until you feel better and then...well the damage is done and you've got all of this scar tissue/adhesion buildup and that's when the whole dilator 'therapy' comes into play. You don't know you have an issue until you experience the problem...UNLESS you have a doctor that tells you about it and ways to minimize/avoid the issues. IMO, most rad oncs won't touch the whole idea...won't talk about it....some even pooh pooh it and you, the female are left to deal with it!

Heck, I don't even think most rad oncs even have the decency to tell patients (male or female) how to minimize /avoid the burning issues that come with radiation. IMO,their objective is to tell you to do nothing and IF a problem arises THEN they'll help you deal with it and their most often solution....is a Rx for some pain medication. I don't know if you have enough posts to send me a PM (I don't want to hijack this thread) and we can communicate on some things to do/not to do. Or, talk to your family doctor/GYN...a doctor that you trust and have confidence in and bring up your concerns. If they avoid talking about it....find someone who WILL talk to you about it!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby SteveNZ » Thu May 03, 2018 7:49 pm

NHMike wrote:There can be side-effects for men as well in surgery and recovery. My surgeon mentioned them to me in the planning session though I was more concerned with survival.......

I am very much the same.
BUT I must admit it (romance etc) is always at the back of my mind and I wonder what I will be like after it all.
My current attitude is very much a '..deal with survival first and worry about these things later..'!

Still it is early days for myself and I have not been through much yet as have many, many others.
Man you folk are all pretty courageous.
Thanks for being here to share. :| :)
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
August 27th-November 2018 - Surgery and long, long recovery
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby Lee » Thu May 03, 2018 8:09 pm

SteveNZ wrote:Have other folk met this at all?
Could it be permanent? :(


Raising hand wildly, me, me, me!

I actually lost 90% of my hearing during my last infusion. My Onc got one of those Dr to Dr referral and I was seeing a ear surgeon in 48 hrs. His comment was "generally chemo does not cause this, but there is this new drugs, (and he mutilated the word Oxyplatin), where they are seeing hearing loss". I shot back with the correct wording follow up with I just had my 12 infusion. I too got antibiotics for a couple of weeks. Didn't help. I also got water in my ears, very weird. He had to put a tube in one ear with most of the water. That cleared up the water problem, and a good chunk of my hearing loss. For the next 5 yrs, I had gradual hearing loss, then it stopped. And I too have some ringing in my ears today. Mild thank goodness.

What is interesting is where my hearing loss range is It is the exact opposite of someone who losses hearing due to age. As surgeon put it, this is not normal hearing loss. The loss for me was permanent, butt as I stated above, the gradual loss stopped after 5 yrs. I have up to 50% loss in one ear, and about 20% percent in the other ear.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby NHMike » Thu May 03, 2018 8:11 pm

Lee wrote:
SteveNZ wrote:Have other folk met this at all?
Could it be permanent? :(


Raising hand wildly, me, me, me!

I actually lost 90% of my hearing during my last infusion. My Onc got one of those Dr to Dr referral and I was seeing a ear surgeon in 48 hrs. His comment was "generally chemo does not cause this, but there is this new drugs, (and he mutilated the word Oxyplatin), where they are seeing hearing loss". I shot back with the correct wording follow up with I just had my 12 infusion. I too got antibiotics for a couple of weeks. Didn't help. I also got water in my ears, very weird. He had to put a tube in one ear with most of the water. That cleared up the water problem, and a good chunk of my hearing loss. For the next 5 yrs, I had gradual hearing loss, then it stopped. And I too have some ringing in my ears today. Mild thank goodness.

What is interesting is where my hearing loss range is It is the exact opposite of someone who losses hearing due to age. As surgeon put it, this is not normal hearing loss. The loss for me was permanent, butt as I stated above, the gradual loss stopped after 5 yrs. I have up to 50% loss in one ear, and about 20% percent in the other ear.

Good luck,

Lee


I have one more Oxaliplatin infusion left, likely next Wednesday. I'll hear for this.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby Lee » Thu May 03, 2018 8:26 pm

NHMike wrote:I have one more Oxaliplatin infusion left, likely next Wednesday. I'll hear for this.


I had VERY gradual loss until that last infusion, I was losing my hearing while sitting in the chair. Thus the Dr to Dr referral.

My understanding, this is a rarer side effect.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby O Stoma Mia » Sun May 06, 2018 10:03 am

lakeswim wrote:...Pray tell - what are the female anatomy side effects from radiation?..?.

You might be able to get help in this area if you have a Women's Pelvic Health Center near you. Others on this forum have found such centers to be helpful., e.g.,

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59284&p=470739#p470739

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby lakeswim » Sun May 06, 2018 10:46 am

SteveNZ wrote:
NHMike wrote:There can be side-effects for men as well in surgery and recovery. My surgeon mentioned them to me in the planning session though I was more concerned with survival.......

I am very much the same.
BUT I must admit it (romance etc) is always at the back of my mind and I wonder what I will be like after it all.
My current attitude is very much a '..deal with survival first and worry about these things later..'!

Still it is early days for myself and I have not been through much yet as have many, many others.
Man you folk are all pretty courageous.
Thanks for being here to share. :| :)


SteveNZ - I could have written just what you wrote here. All of it. I am terrified to start this stuff. (I feel great though - so still in denial too.)

BTW - I was diagnosed in March too so looks like we may be on the same path. I have not started treatment yet. Head to Cleveland tonight for 2nd opinion tomorrow. Good luck to you and stay in touch.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Capecitabine (Xeloda) and Hearing Loss ?!?!?!

Postby lakeswim » Sun May 06, 2018 10:50 am

O Stoma Mia wrote:
lakeswim wrote:...Pray tell - what are the female anatomy side effects from radiation?..?.

You might be able to get help in this area if you have a Women's Pelvic Health Center near you. Others on this forum have found such centers to be helpful., e.g.,

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59284&p=470739#p470739


Thank you so much for the pelvic health link. Can you advise me on what to say to these docs who downplay side effects? My oncologist INSISTS hearing loss is not a side effect so I can see what he might say when I bring up vaginal stenosis. And I'm not sure what to ask for -- their plan for how I will handle the side effect? If they monitor for it?

How does one handle it when these experts poo-poo (sp?) your concerns? I am heading to Cleveland for an appt tomorrow and would like to be prepared with better strategy for this second opinion. I feel like this is my last shot at getting answers. Thank you.

Thank you!!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 111 guests