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Vanessa

Starting Chemotherapy

29 posts in this topic

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!! ;) )


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, 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

ISN Support Specialist

International Scleroderma Network (ISN)

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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.


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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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

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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

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Hi Vanessa,

 

I have diffuse Scleroderma with skin involvement, I have just finished 10 Months of treatment for Inflammatory breast cancer.

I had 3 months of Chemo, then a mastectomy, then 3 more months of chemo then 5 weeks of radiation.

 

The chemo is fine with scleroderma it may even help with the skin and other problems, it is radiation that is the big problem. 2 doctors agreed on radiation and 2 disagreed on radiation, so it was left up to me, I did go ahead . It is 6 months since I finished radiation and things are pretty good, skin tightening a bit and still some cording under my arms, the cording is collagen production so we don't have much luck. I am still having a massage once a week to the chest and under the arm, the doctors would like this for 2 years if possible. Your doctors need to work in close with the cancer doctors, they changed some of my medication to cope with things and put me back on prednisone, (not happy) now down to 5 mg and hoping to came off it in the next 6 months.

 

I hope things go well and my thoughts are with you,

 

Cheryl

 

Diffused Scleroderma, Kidney involvement, stomach issues, Inflammatory Breast cancer

 

Ladies this form of breast cancer needs no lump just thickening of the skin ( so much like scleroderma)

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Hi Cheryl,

 

A warm welcome to these forums!

 

I'm very sorry to hear that you've had such a lot of health problems to contend with; it must seem to you to be one thing after the other. :( I do hope that after the treatment you've received for breast cancer, you continue to improve in leaps and bounds.

 

Regarding Diffuse Scleroderma we have a link here and also a link to kidney involvement and gastrointestinal involvement which I hope you'll find interesting and informative.

 

Do please keep posting and let us know how you are faring. :)


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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Hello Cheryl

Welcome to the forums! I'm glad that your cancer treatment is over and was successful. :emoticon-congratulations:

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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:emoticons-group-hug:

Cheryl and Vanessa, Best wishes for a speedy recovery! :emoticons-group-hug:

miocean


ISN Artist

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I went throught 6 months of chemotherapy with stem cell transplant for Burkitt's Lymphoma 8 years ago.

 

I had projectile vomiting once - and was very careful to insist on a good dose of anti-nausea medication before the particular drug after that. There is very little notice before one of these episodes, unlike typical nausea.

 

Chemo levels were, much, much higher than given for sclero or post-transplant treatment. Example: methotrexate treatment later requires "rescue" drug (leucovorin). Other than bone marrow, the immune system is largely wiped ought. To prevent infection, I took antibiotics, anti-virals and anti-fungal medication until white blood cell numbers rise to normal. In addition, it was necessary to avoid sources of infection - other people, animals (don't get near a cat box), dirt (avoid houseplants) and especially, don't eat anything that isn't cooked.

 

I found the periods after the chemo worse than the treatment. As the effects become manifest, I had what I think of as "feeling like I'd been run over by a truck".

 

I recall 2 GCSF drugs: "neupogen", used to stimulate the bone marrow to produce white blood cells and procrit to stimulate red cells. Neupogen may require pain medication when the bone marrow starts working. The pain is in the lower back.

 

Craig

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Thanks Craig

Yes I have been injecting myself daily with GCSF. I am going to have some bloods taken later to see if that has helped as today is day 10.

I normally run on a very low leukacyte level and had problems when I was on Cellcept because of this.

Before I started the chemo my WBC was 3.4

I do wonder though how these stimulant type drugs will affect my Scleroderma.

Just have to wait and see I guess.

Thanks for all the feedback

Vanessa

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Hi Vanessa:

I had breast cancer and went through surgeries and treatments 8 years ago. I was diagnosed with scleroderma almost two years ago.

Yes - you can do it.

I was so thankful for my wonderful doctors, new treatment therapies and medications.

Today I am maintaining my health and starting a new life over in a warmer place - California.

Best wishes and warm hugs to you.


Kay Tee

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