Friend diagnosed: Need the real information.

Kimba1505

Hello Everyone,
I am very familiar to these boards in that I have been on the Head and Neck discussion board since April 2010 when my guy was diagnosed with Stage IV SCC of his tonsil. I know what these boards are and what they do. I could not have been the supportive caregiver I was without what gets shared here.
Now one of my dearest friends from high school was diagnosed with Ovarian cancer. She was fortunate that they were doing a hysterectomy for cysts when it was discovered. Her ovaries were full of cancer that was not detected on any of her ultrasounds or other pre-operative tests. Surgical biopsies of the reigon show no signs of it anywhere else except a smidge (clinical term - right?) starting to enter the one filopian tube. Her "marker" went down to 14 post surgery. Sorry for my lack of proper spelling or words, this is a new cancer arena for me.
So anyway, they are proposing she do chemo to chase out any of those buggers that are floating or hiding. With 6 rounds at 21 day intervals of carboplatin/taxol they are saying she will have only a 5% chance of any reoccurance (15% if she does not do the chemo).
What I want from you gals is to know what to expect so I can share it with her. She was told her hair will fall out...this is what freaks her out the most. Not the two port sites for chemo...it's the hair. I have to mention the humor of this friend...it has been one of her strengths always, and will continue as she goes through this. She also has a wonderful husband, and supportive parents near by. She has 3 kids 17, 15, 10. She is 46 years old.
Funny thing about the hair...my guy with H&N cancer was told he would not lose his hair on carboplatin/taxol (started with cisplatin but hearing loss made the doctors switch) and he did not lose his hair. Why is it different for ovarian??
Tell me what I need to know...soup to nuts.
Thank yo sooooo much in advance.
Kim

carolenk

Hair loss and more stuff
I don't know why men don't lose their hair on Taxol--the main difference is their higher testosterone level. Let your friend know that she is not only going to lose her hair but also go straight into menopause (which she was already prepared for) and she might have a LOT of night sweats. I was not prepared for the drenching night sweats as I had already gone thru menopause a few years before the debulking/hysterectomy. Finally, I figured out that I should just put a change of clothes in the bathroom so I had something ready to change into in the middle of the night and throw a towel on the bed so I didn't have to change the sheets. Not only did I lose sleep, but it was rough on my husband also.

If I were giving advice to my sister who was in your friend's position, I would tell her to just cut her hair really short ASAP, go order a wig or two, then about 2 weeks after the first chemo, get her head shaved as her hair will be falling out about that time.

I have seen some women write that they were told NOT to shave their head with a razor as "it damages the hair follicle." I couldn't stand the bristles under the wig and was a LOT more comfortable using a safety razor to shave my head smooth on a regular basis. My hair grew back thicker and curly. Not all of the hair falls out--just enough to make you look like a cancer patient. My husband liked rubbing my smooth head and told me I was still beautiful to him so it wasn't all bad.

I don't think anything can prepare the kids for seeing their mom lose her hair--maybe having it cut short first will help. I really don't know. Actually, that would be my biggest concern--to help the kids over the shock of having a bald mother. Her attitude towards it can make a big difference with how the kids deal with it so I hope she can find some humor in being bald.

Since your friend has a husband, let her know that there is a good chance that while she is going thru chemo, having intercourse is going to be really different due to the vaginal dryness and the effect chemo has on the mucous membranes of that area. No one talks about the painful intercourse much here, but the uterine cancer discussion board had some good discussions about non-toxic vaginal lubricants that she is probably going to need. Intercourse gets less painful after chemo but there is going to always be "atrophic vaginitis" which goes along with menopause. There is a higher risk of cystitis/UTIs after menopause so the practice of urinating after intercourse is highly recommended.

OK, I'm sure you will get more helpful info from the others here. This is such a kind place to come--I think of it as a refuge where the other survivors/friends & family of survivors understand what you & your friend are going thru.

I always copy my comments before posting as they sometimes just disappear when I try to "post comment." That's so annoying...sigh.

Welcome.

Bluebird Bush

carolenk said:

Hair loss and more stuff
I don't know why men don't lose their hair on Taxol--the main difference is their higher testosterone level. Let your friend know that she is not only going to lose her hair but also go straight into menopause (which she was already prepared for) and she might have a LOT of night sweats. I was not prepared for the drenching night sweats as I had already gone thru menopause a few years before the debulking/hysterectomy. Finally, I figured out that I should just put a change of clothes in the bathroom so I had something ready to change into in the middle of the night and throw a towel on the bed so I didn't have to change the sheets. Not only did I lose sleep, but it was rough on my husband also.

If I were giving advice to my sister who was in your friend's position, I would tell her to just cut her hair really short ASAP, go order a wig or two, then about 2 weeks after the first chemo, get her head shaved as her hair will be falling out about that time.

I have seen some women write that they were told NOT to shave their head with a razor as "it damages the hair follicle." I couldn't stand the bristles under the wig and was a LOT more comfortable using a safety razor to shave my head smooth on a regular basis. My hair grew back thicker and curly. Not all of the hair falls out--just enough to make you look like a cancer patient. My husband liked rubbing my smooth head and told me I was still beautiful to him so it wasn't all bad.

I don't think anything can prepare the kids for seeing their mom lose her hair--maybe having it cut short first will help. I really don't know. Actually, that would be my biggest concern--to help the kids over the shock of having a bald mother. Her attitude towards it can make a big difference with how the kids deal with it so I hope she can find some humor in being bald.

Since your friend has a husband, let her know that there is a good chance that while she is going thru chemo, having intercourse is going to be really different due to the vaginal dryness and the effect chemo has on the mucous membranes of that area. No one talks about the painful intercourse much here, but the uterine cancer discussion board had some good discussions about non-toxic vaginal lubricants that she is probably going to need. Intercourse gets less painful after chemo but there is going to always be "atrophic vaginitis" which goes along with menopause. There is a higher risk of cystitis/UTIs after menopause so the practice of urinating after intercourse is highly recommended.

OK, I'm sure you will get more helpful info from the others here. This is such a kind place to come--I think of it as a refuge where the other survivors/friends & family of survivors understand what you & your friend are going thru.

I always copy my comments before posting as they sometimes just disappear when I try to "post comment." That's so annoying...sigh.

Welcome.

your post hair loss & more stuff
How do you copy your comments? I would like to do that but don't know how. Can I go back and copy old comments I have already posted? Thanks, Geni

carolenk

Bluebird Bush said:

your post hair loss & more stuff
How do you copy your comments? I would like to do that but don't know how. Can I go back and copy old comments I have already posted? Thanks, Geni

How to copy & paste comments
OK, since I brought this up: You have to "select the text" first. Take your cursor to the beginning or end of your text in the comment box--then hold down the left mouse key and move your cursor over the entire text. It should be highlighted in some way.

Then click on right mouse key and you see a window with a menu that says "cut, copy, paste, etc." Choose "copy" and if your post disappears, then you can just create a new reply and click on the right mouse key to get to that same window again and click on "paste" to put the copied text into the new comment box.

This is easier to show you in person than to try to explain it--it's probably going to be easier to find a teenager to show you to do this.

I think you can "copy and paste" just about anything that you can "select."

Good luck.

Bluebird Bush

carolenk said:

How to copy & paste comments
OK, since I brought this up: You have to "select the text" first. Take your cursor to the beginning or end of your text in the comment box--then hold down the left mouse key and move your cursor over the entire text. It should be highlighted in some way.

Then click on right mouse key and you see a window with a menu that says "cut, copy, paste, etc." Choose "copy" and if your post disappears, then you can just create a new reply and click on the right mouse key to get to that same window again and click on "paste" to put the copied text into the new comment box.

This is easier to show you in person than to try to explain it--it's probably going to be easier to find a teenager to show you to do this.

I think you can "copy and paste" just about anything that you can "select."

Good luck.

How to copy & paste comments
Thank you - I had absolutely forgotten how to do that - or even that one can do it - it has been so long ago. You explained very well and I didn't even need a teenager, Geni

Bluebird Bush

carolenk said:

How to copy & paste comments
OK, since I brought this up: You have to "select the text" first. Take your cursor to the beginning or end of your text in the comment box--then hold down the left mouse key and move your cursor over the entire text. It should be highlighted in some way.

Then click on right mouse key and you see a window with a menu that says "cut, copy, paste, etc." Choose "copy" and if your post disappears, then you can just create a new reply and click on the right mouse key to get to that same window again and click on "paste" to put the copied text into the new comment box.

This is easier to show you in person than to try to explain it--it's probably going to be easier to find a teenager to show you to do this.

I think you can "copy and paste" just about anything that you can "select."

Good luck.

How to copy & paste comments
Thank you - I had absolutely forgotten how to do that - or even that one can do it - it has been so long ago. You explained very well and I didn't even need a teenager, Geni

jbeans888

carolenk said:

Hair loss and more stuff
I don't know why men don't lose their hair on Taxol--the main difference is their higher testosterone level. Let your friend know that she is not only going to lose her hair but also go straight into menopause (which she was already prepared for) and she might have a LOT of night sweats. I was not prepared for the drenching night sweats as I had already gone thru menopause a few years before the debulking/hysterectomy. Finally, I figured out that I should just put a change of clothes in the bathroom so I had something ready to change into in the middle of the night and throw a towel on the bed so I didn't have to change the sheets. Not only did I lose sleep, but it was rough on my husband also.

If I were giving advice to my sister who was in your friend's position, I would tell her to just cut her hair really short ASAP, go order a wig or two, then about 2 weeks after the first chemo, get her head shaved as her hair will be falling out about that time.

I have seen some women write that they were told NOT to shave their head with a razor as "it damages the hair follicle." I couldn't stand the bristles under the wig and was a LOT more comfortable using a safety razor to shave my head smooth on a regular basis. My hair grew back thicker and curly. Not all of the hair falls out--just enough to make you look like a cancer patient. My husband liked rubbing my smooth head and told me I was still beautiful to him so it wasn't all bad.

I don't think anything can prepare the kids for seeing their mom lose her hair--maybe having it cut short first will help. I really don't know. Actually, that would be my biggest concern--to help the kids over the shock of having a bald mother. Her attitude towards it can make a big difference with how the kids deal with it so I hope she can find some humor in being bald.

Since your friend has a husband, let her know that there is a good chance that while she is going thru chemo, having intercourse is going to be really different due to the vaginal dryness and the effect chemo has on the mucous membranes of that area. No one talks about the painful intercourse much here, but the uterine cancer discussion board had some good discussions about non-toxic vaginal lubricants that she is probably going to need. Intercourse gets less painful after chemo but there is going to always be "atrophic vaginitis" which goes along with menopause. There is a higher risk of cystitis/UTIs after menopause so the practice of urinating after intercourse is highly recommended.

OK, I'm sure you will get more helpful info from the others here. This is such a kind place to come--I think of it as a refuge where the other survivors/friends & family of survivors understand what you & your friend are going thru.

I always copy my comments before posting as they sometimes just disappear when I try to "post comment." That's so annoying...sigh.

Welcome.

I am sorry to hear about
I am sorry to hear about your friend. I was also on the same chemo and regimene as your friend. I lost my hair about 2 and a half weeks after the first chemo. I suggest shaving it really really short. I had long hair and decided to donate it. I figured why waste it. To be honest everyone goes thru the same thing. Once they find out they are gonna loose there hair they run out and buy a wig, I did also, but really you come to find out loosing your hair is the least of your problems. I remember going out the first time with no hair and being so self conscious. Then I said screw it, whatever. Anyways, constipation is a big problem for women the chemo screws up the bowels. Make sure she takes a stool softener or milk of manesia. Many people, including myself can get bowel obstructions easily. Encourage your friend to join this group. There is great support. All the best
Joyce

Hissy_Fitz

It's the Taxol that does the
It's the Taxol that does the hair in. I lost every hair on my body. I agree with getting it cut really short before she starts chemo. Her hair will start falling out almost exactly 14 days after she starts Taxol.

Sounds like she is getting IP chemo, as well as IV. That's good. Her chances of recurrence are really low if she does the chemo.

The chemo might make her sick. I'm sure she knows that. My first session was awful, but they got better after that. Some women have just the opposite experience - theirs seem to be cumulative.

A normal CA125 after surgery is amazing. You can't be too careful with OC, though. I have a friend who was diagnosed Stage I about 8 years ago and it came back last year.

Carlene

Kimba1505

Hissy_Fitz said:

It's the Taxol that does the
It's the Taxol that does the hair in. I lost every hair on my body. I agree with getting it cut really short before she starts chemo. Her hair will start falling out almost exactly 14 days after she starts Taxol.

Sounds like she is getting IP chemo, as well as IV. That's good. Her chances of recurrence are really low if she does the chemo.

The chemo might make her sick. I'm sure she knows that. My first session was awful, but they got better after that. Some women have just the opposite experience - theirs seem to be cumulative.

A normal CA125 after surgery is amazing. You can't be too careful with OC, though. I have a friend who was diagnosed Stage I about 8 years ago and it came back last year.

Carlene

Thank you so much for the info.
Thank you all that responded to my post. Yes, I do believe hair loss is the least of the worries; but this is what she will focus on, the least serious, as her way of coping. I think she will like the idea of donating her hair and I will mention she cut it short before it starts to fall out. I too think the kids will have a hard time with thier bald mom. Two teenage girls and a 10 year old boy.
I will gradually inform her of some of the other informaiton, like vaginal dryness, constipation, etc. Like I said, she is still at the hair part.
I will also suggest she check out these boards as well. I know for me, I could not have kept my head above water without them.
Best Wishes to all of you,
Kim

AnneBehymer

Kimba1505 said:

Thank you so much for the info.
Thank you all that responded to my post. Yes, I do believe hair loss is the least of the worries; but this is what she will focus on, the least serious, as her way of coping. I think she will like the idea of donating her hair and I will mention she cut it short before it starts to fall out. I too think the kids will have a hard time with thier bald mom. Two teenage girls and a 10 year old boy.
I will gradually inform her of some of the other informaiton, like vaginal dryness, constipation, etc. Like I said, she is still at the hair part.
I will also suggest she check out these boards as well. I know for me, I could not have kept my head above water without them.
Best Wishes to all of you,
Kim

numb feet and hands
I am on the same chemo and time line as she will be on tell her to watch out for the numb feet and hands it comes from the taxol. She needs to let the doctor know when it starts and how bad it gets because it can cause never damage really bad. I have heard that there are some who have problems walking because of the nerve damage. I can believe that because mine has gotten really bad and I have even thought about using a walker some days because my feet are bothering me so much. It has moved into my hands also but not that bad I only have one more treatment of the taxol/carbo next week and I still have to talk with the doctor to see if we are going to lower the amount of taxol because of what it had done to my feet. Chemo brain is another big one had to explain what it does but I have a IQ of 131 and at times feel like my shoe size is bigger than my IQ lol. There are a lot of side effects to many to go over but tell her that it is different for each peorson. I will be praying for your friend.

Anne

mopar

I'LL BE PRAYING FOR YOUR FRIEND
So sorry to hear she has to deal with this, but she has a wonderful friend in you! Everyone has given you sound advice. What stage is her cancer? Her prognosis is extraordinarily great! As she proceeds with treatments, we can offer some helpful suggestions for side affects, etc. I was also on the carboplatin/taxol regimine, which is the general standard to start off with.

Keep us informed. And I'll be praying for your husband as well, AND for you - God Bless you for your strength and support of your loved ones!

Monika

Kimba1505

mopar said:

I'LL BE PRAYING FOR YOUR FRIEND
So sorry to hear she has to deal with this, but she has a wonderful friend in you! Everyone has given you sound advice. What stage is her cancer? Her prognosis is extraordinarily great! As she proceeds with treatments, we can offer some helpful suggestions for side affects, etc. I was also on the carboplatin/taxol regimine, which is the general standard to start off with.

Keep us informed. And I'll be praying for your husband as well, AND for you - God Bless you for your strength and support of your loved ones!

Monika

Starts treatment tomorrow.
My friend starts her chemo treatments tomorrow. I am going to visit her today (3 hours away). I wish I could be closer; but I know she has good family support. I am so gratefult for what you all have shared, it helps me tremendously in supporting her.
My best to all of you,
Kim

kricketbear

losing hair
Hi Kim! What a super friend you are to help find out what your friend can expect! I had stage 3 ovarian, and was'nt that upset about it all knowing I was in good hand. Losing my hair was a different matter. Two weeks after my first chemo (carboplatin/toxel) I scratched the back of my head and came away with a small clump of hair. Tell your friend it's ok to cry like I did at first, then put some in an envelope and label it with the date. After that, it was'nt so bad. She'll want to get some little soft warm beanie hats (whether she gets a wig or not) to wear in the house to keep her head warm. I never got a wig since I had really cute little hats! Now...the reason for the envelope..when her hair comes back, she'll be able to compare it with her former hair..mine is now a different color and curly! My hair came back for good starting two weeks after my last chemo. And, believe it or not, family won't mind her beautiful bald hed when they remember she's getting better every day!! Tell your friend my prayers are with her!

angiedryden

kricketbear said:

losing hair
Hi Kim! What a super friend you are to help find out what your friend can expect! I had stage 3 ovarian, and was'nt that upset about it all knowing I was in good hand. Losing my hair was a different matter. Two weeks after my first chemo (carboplatin/toxel) I scratched the back of my head and came away with a small clump of hair. Tell your friend it's ok to cry like I did at first, then put some in an envelope and label it with the date. After that, it was'nt so bad. She'll want to get some little soft warm beanie hats (whether she gets a wig or not) to wear in the house to keep her head warm. I never got a wig since I had really cute little hats! Now...the reason for the envelope..when her hair comes back, she'll be able to compare it with her former hair..mine is now a different color and curly! My hair came back for good starting two weeks after my last chemo. And, believe it or not, family won't mind her beautiful bald hed when they remember she's getting better every day!! Tell your friend my prayers are with her!

Zofran
My mom's cancer returned a couple months ago and she is currently back on carbo/taxol. She actually had her second treatment today and her CA=125 has dropped from 88 to 33.9. Zofran has really been great for her. She has not been sick at her stomach one time. She also lost her hair right at 2 weeks after her first treatment. I wish your friend great success with the treatments.

Kimba1505

angiedryden said:

Zofran
My mom's cancer returned a couple months ago and she is currently back on carbo/taxol. She actually had her second treatment today and her CA=125 has dropped from 88 to 33.9. Zofran has really been great for her. She has not been sick at her stomach one time. She also lost her hair right at 2 weeks after her first treatment. I wish your friend great success with the treatments.

Hats
Thank you ladies for your kind words and support. Angie, I hope the best for you mom as she fights again.
Visiting with my friend we went shopping for hats and we got her 3. We had lunch, and went to the grocery store to get food for the week.
They gave her all kinds of anti-nausea medication including Emend, so she had no problems except for what she called "Roid-rage" that kept her buzzing for a couple days.
I like the envelope for the hair idea. She thinks when her hair comes back it will be white!! She also bought a hot pink wig (Halloween time). I don't doubt that she will wear it!!
Best to all of you,
Kim