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Vanessa

Starting Chemotherapy

29 posts in this topic

I have not posted for a little while but it is now almost 5 weeks since I had my mastectomy and I will be starting chemo on Tuesday.

 

Are there any other Sclero folks who have had cancer, particularly breast cancer but also others who have had chemo for other types?

 

I am healing well from the op but am troubled by "Cording" where the veins which would normally carry lymph fluid to the arm ( all my lymph glands for the breast were removed) have hardened due to fast forming scar tissue. This is doubtless worsened by the Sclero. It is painful and means that I have to keep stretching it to avoid losing movement in the arm.

 

I cut my long hair a bit shorter because it is recommended as it can be shocking when it starts falling out if it is all long and gossamer like.

 

Haven't got a wig yet but I will look into them.

 

Vanessa

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Hi Vanessa,

 

Thankfully I have not had to undergo Chemotherapy for cancer, so can't actually advise you on that score.

 

However, I do really wish you the very best of luck with your treatment and also admire your bravery; it makes me feel quite humble.

 

As I mentioned to you before, I have a couple of close friends who've been through Chemo and come out the other side very successfully. Both of them are now fit and well and one has been clear of cancer for over 10 years.

 

I shall be thinking of you.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Vanessa,

 

I could relate a couple of success stories too. One I will go ahead and share now: The then 34 year-old daughter of one of my 'life' friends found out she was finally pregnant AND had an aggressive form of breast cancer within weeks of each other. She had a modified radical mastectomy on the affected side and with the help of a very good oncologist and her OB/GYN, underwent chemo while pregnant! She and the baby (toddler now) are doing just fine, although she did opt for an elective mastectomy of the other breast, just to be on the safe side, but after she had successfully breast fed the baby. How's that for great?!

 

Although most of us probably haven't experienced what you are going through, we're all here for you, sending warm hugs and good wishes your way daily.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Vanessa,

 

I had breast cancer, mastectomy and 3 types of Chemo drugs 2 years ago. So far so good. I also had long hair which was cut short, it is very messy as it thins although I didn't completely lose my hair until I was finished with Chemo; my doctors were very surprised. I wore scarfs or a cap instead of a wig. I also had problems with cording and went to therapy, which did help. I still have tightness and numbness on that arm and was told that's just the way it is. Otherwise I'm doing okay. If you have any questions please feel free to PM me.

 

Take care... You're in my thoughts,

 

Lea Ann

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Hi Lea Ann,

 

Welcome to the forums!

 

It's very good to hear that your Chemo treatment was successful and you're doing well.

 

I'm looking forward to reading your posts and getting to know you! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Vanessa

 

I've had no experience of chemo but a very close friend went through exactly the same op a few years ago. Like you hers was aggressive so had a mastectomy then went through radiotherapy followed by chemo therapy. Like every woman your hair is so important that just before she started the chemo she had a wig made exactly the same as her own hair and even got her normal hairdresser to dye it in the same way. When her hair showed the first signs of falling out she called her hairdresser who went to her home and shaved all her hair off so that she could wear the wig. I have to say it was incredible and you could not tell the difference! It gave her more confidence when she went out and about but she tended to just wear a scarf while at home. She is now fully recovered and just goes for the normal check ups.

 

You take care and wish I you all the very best.

 

Buttons

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Hi Lea Ann,

 

Welcome to the Forums! I hope you'll post often and let us get to know you. If you have any problems navigating around the site, let me know.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Vanessa,

 

So sorry you have to go through this and sclero at the same time. Just take it one day at a time. I can't even imagine! My thoughts are with you!

 

HUGS!

 

susieq40 :emoticons-i-care:

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(((HUGS))) to you Vanessa as you heal up - I will keep you in my thoughts. I know of nobody with scleroderma and the others on this board, so I cannot give you a personal view. I can keep you in my thoughts.

 

Lori

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Hi Vanessa,

 

I just wanted to say that I am glad your surgery is behind you and you are recuperating as well as you are.

 

I've had several friends who have been through chemotherapy after breast cancer, but none who had Sclero in addition.

 

However, when their hair grew back, it was curly! Also, as with Lea Ann, many of them preferred scarves and/or caps, as they found the wigs a might itchy.

 

I wish you the best with your treatments and am keeping good thoughts of you during this time.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Lea Ann, welcome to Sclero Forums. We are very glad to have you here!

 

Vanessa, many times chemotherapy is used for treatment of scleroderma lung involvement. My husband receives lifelong chemotherapy post-lung-transplant and he hasn't had any problems with it, although I'm quite sure it's in lower doses than you will be getting.

 

One thing I don't understand is, when they advise you to cut your beautiful long hair, why don't they also advise you have it made into a wig for yourself? After all, many people donate their long locks for wigs for cancer patients, and it seems it would be considerably cheaper, and a fabulous match, if your own hair was used.

 

I am sending lots of extra good thoughts and warm hugs your way!

:emoticon-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley

 

I think the doses are quite a bit higher than for Scleroderma use. I have been at the hospital this afternoon to finalise everything and was told that as my body fluids will be so toxic I must wash my clothes seperately from the rest of the family and run the cycle twice and that I should flush the loo twice too! My new name is to be Toxic Peg.

 

The wig idea sounds great but I think would probably be quite expensive and probably take a fair time to organise. They said to expect hair loss in 2-3 weeks and to shave it clean when it starts. We get a wig on the NHS and I will let you know what its like.

 

Fingers crossed for tomorrow.

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Hello Vanessa

 

I really hope the chemotherapy goes well. :yes: My sister, initially misdiagnosed with follicular lupus, lost big patches of her hair that won't grow back because of alopecia scarring and she wore wigs for a few years. She had a long one and a short one made from real hair and they looked great. People never worked out it was a wig when she went from long to short thinking she'd had her hair cut! Now she's grown her hair and strategically pulls it back to cover the bald patches or wears hats. At least you can look forward to all of yours growing back and returning to its former glory.

 

Take care.

 

 

Hello Lea Ann

 

Welcome to the forums and congratulations on surviving both scleroderma and cancer. :emoticons-line-dance: I look forward to hearing more about you and your journey.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I had my Chemo on Tuesday and I have never felt so dreadful in my whole life.

Everything you ever heard about it is true.

I managed to projectile vomit, covering my entire bath, the walls, then after a dash to squark for my daughter(I had a sudden fear of choking in the middle of it all) my bedroom carpet, the landing and my bathroom carpet.

I even wet myself for good measure.

My darling daughter Samina gave me big hugs whilst I was crying at the shame of it all then donned her rubber gloves and got down to business.

Johny my partner was dancing around in the background whilst I was telling him to skidaddle. We met 4 months ago and 2 weeks later I found I had breast cancer so I was not yet ready to share such a display with him. However yesterday morning he quietly explained that I am not to hide and he is more than ready to deal with whatever comes along.

This morning I received the most beautiful letter from my other daughter Yasmin who is in her final year at uni and coming home for the weekend tomorrow.

Once again I give thanks for my wonderful friends and family for I am truly blessed.

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Oh Vanessa, I am sorry it was so awful. Before your next treatment contact both your doctor and the infusion unit people. They can pre-medicate you to help alleviate the nausea and vomiting, as well as some of the less obvious side effects. Be very vocal about what you experienced. They truly can do something about it.

 

Your daughters and John sound wonderful and I'm sure it is a case of 'giving back' - all the love and care you give them.

 

Feel better, Honey, and hang in there.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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