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Starting Chemotherapy


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#1 Vanessa

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Posted 12 February 2011 - 06:01 AM

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

#2 Joelf

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Posted 12 February 2011 - 10:03 AM

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.

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#3 Jeannie McClelland

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Posted 12 February 2011 - 10:38 AM

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.
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#4 Lea Ann

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Posted 12 February 2011 - 11:28 AM

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

#5 Joelf

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Posted 12 February 2011 - 12:55 PM

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! :)

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#6 Buttons

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Posted 12 February 2011 - 01:00 PM

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

#7 Jeannie McClelland

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Posted 12 February 2011 - 02:44 PM

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
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#8 susieq40

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Posted 12 February 2011 - 09:59 PM

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:

#9 docmartenmom

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Posted 12 February 2011 - 10:58 PM

(((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

#10 debonair susie

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Posted 13 February 2011 - 07:29 PM

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,

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#11 Shelley Ensz

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Posted 14 February 2011 - 12:36 PM

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
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#12 Vanessa

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Posted 14 February 2011 - 01:40 PM

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.

#13 Amanda Thorpe

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Posted 14 February 2011 - 02:26 PM

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
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#14 Vanessa

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Posted 17 February 2011 - 10:36 AM

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.

#15 Jeannie McClelland

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Posted 17 February 2011 - 11:27 AM

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
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#16 Joelf

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Posted 17 February 2011 - 02:40 PM

Oh Vanessa, poor, poor you; I'm so sorry.

What a lovely family you have and as for your partner Johny - he sounds as if he's an absolute star!!

As Jeannie has said, you must inform your cancer team and let them know what a dreadful reaction you had so that hopefully next time it might be a little more bearable.

Here's a large group :emoticons-group-hug: for you! (I'm the red one!! ;) )

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#17 Sweet

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Posted 17 February 2011 - 05:06 PM

Hi Vanessa, my love to you during your healing. I'm sorry that you're going through this, but glad that things seems to be going as well as can be expected. Hang in there Chickie! :emoticons-i-care:

Welcome Leanne!! :flowers:
Warm and gentle hugs,

Pamela
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#18 Amanda Thorpe

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Posted 18 February 2011 - 07:10 PM

Hello Vanessa

Please make sure you tell the hospital about your experience to make sure they are giving you all the anti sickness medication they can. Here are some :flowers: for you.

Take care.
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#19 Buttons

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Posted 19 February 2011 - 06:45 AM

Vanessa, I'm sorry to hear that your first treatment was so bad, has others have said do tell them about your experience because they can help with sickness etc. It is good that you have such supportive people around you to help and your partner sounds to be a real gem!

Sending warm hugs :flowers:


Buttons

#20 Vanessa

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Posted 19 February 2011 - 07:39 AM

Hi All
Thank you so much for your kind wishes and support. It all really helps.
I started a new antisickness yesterday and that plus the fact that I guess this stuff is working its way out of my body means I am feeling MUCH less sick.
What a relief.
I have to inject myself every day with something called GCSF which is a bone marrow stimulator because I have a propensity even on Cellcept for my blood levels to drop very quickly.
I get a bit scared wondering what it will do as far as my Scleroderma is concerned but I guess I have to just "gun" things down in order and hope for the best.
Thanks all
Vanessa