Cutaneous B-Cell Lymphoma and Lymphedema, Cutaneous T-cell lymphoma and Lymphedema, Hodgkins Lymphoma, Kidney and Renal Cancer, Cervical Cancer, Renal Cell Carcinoma, Breast Cancer, Ovarian Cancer, Testicular, arm swelling, Skin Cancer, angiosarcoma, kaposi's sarcoma, gallium scan, axillary node dissection, gynecological cancer, axillary reverse mapping, lymphatic cancers, inguinal node dissection, cancer treatment, Complete decongestive therapy for arm lymphedema, lymphedema therapy, intensive decongestive physiotherapy, breast cancer related lymphedema, upper limb lymphedema

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Postby silkie » Sun May 20, 2007 3:40 am

Hi everyone

The Chemo you have is worked out for each individual on age weight and of course the type of cancer

Here was the first problem i came across my actually body weight
is not what i weigh there is lots of fluid that actually increases my natural body weight so when working out the chemo dose i should have had
the dose was worked out on the weight from the scales
The effect was serious side effects sickness 24/7 for three weeks
it was pretty devestating that first chemo i really thought of stopping it
you hear chemo is unpleasant but this was horrorific
yet i thought not knowing any better this was what chemo was

They delayed the second session of chemo and reduced the dosage taking into account the lymph.

Chemo after that was so much easier also meds were given to me for sickness etc they helped so much.

The effect on my limbs was very visible huge increase in swelling even MLD had little effect also i could only do a watered down version of my lymph care . I usually do my legs to my chest but that could have caused problems in my lungs so it was legs only while i was having chemo
The skin condition even with massage and cream that too pitted a lot more
to be honest the skin reminded me of a plucked chickens ugly lol
the skin was tender and sore and over stretched with the ammount of fluid

I needed patience lots of it I was seeing all the work i put in on my limbs being wiped out by the chemo.

Even excercise was difficult as the chemo made me so tired and weak
I went back to the basics just felexability excercises and those were really hard to do at times.

The times i was asked the question When were you last treated for cancer
because of the lymph and the suprise and shock of many of the medical stafff when i told them i was born with it and NEVER had cancer before

So many still knowing nothing about primary lymph of even its existance

And even in a brilliant cancer hospital, I was asked why they could not use my left arm for BP and getting blood samples.

It was even suggested seeing as the lymph wasnt so bad in my left arm that they could use it.

The staff and there care for me and the cancer was Brilliant and such
genuine understanding and caring for each patient

But i am so glad i know what i know about lymphedema or i could
have had some serious probelms with infections even cellulitus caused by injectiuons in lymph limb can you imagine chemo knocks your immune system to pot then to get an infection caused by the taking of a blood sample.

The chemo has stopped now its 3 weeks since my last lot and my legs are going down the skin is showing signs of improvement and this week i started back in my old routine of mld full body

It will take time to get back to what is normal for me in my legs but
do you know how good it feels to actually still be doing MLD
lol yup being back in the old routine it feels so good that i still here
doing this daily chore


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Chemotherapy - Rituxan - My Experience - Pat

Postby patoco » Sun May 20, 2007 1:01 pm

Hi Ya Silkie :D :D :D

Sunshine day seeing my very favorite person in the whole of the UK post, not one but twice today :!: :!: :!: :!:

I realllllllly want to thank you for sharing this.

This is a question that probably is on the minds of a number of we primary lymphers. :?: :?:

I didn't have the hard core chemo for my lymphoma because the immune system is already so bad.

But, I did have Rituxan and there was a reaction.

I could tell immediately when the Rituxan hit the legs because they went into hyper itch..almost like an allergic reaction. They also turned a horrid dark purplish color.

An extra amount of benedryl helped on the itch and within hours of ending the session, the color would return to normal.

Thus far, there have been no long term problems and no complications from taking it.

:arrow: :arrow: WE HAVE MISSED YOU AND YOUR WONDERFUL SPIRIT IN OUR FAMILY HERE :idea: :idea: :idea: :idea: :idea:

Special hgs to You :lol: :) :D :wink:

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Postby silkie » Wed May 23, 2007 6:08 am

Hugggg you right back Irish
it is so good to be back
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welcome back

Postby suzeeq » Wed May 23, 2007 4:02 pm

Hi Silkie, I had no idea that you have been ill with cancer. I just knew that you hadn't been posting alot and thought that the LE was acting up. Like you didn't have enough to deal with already. I am so sorry for what you have been going through. Great to see you posting again. Hope you continue to improve. Best of luck to you. Susan
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Postby silkie » Wed May 23, 2007 5:33 pm

Thank you Susan

Ther lymph and the routine in a funny way helped

the patience and determination to live and not let the lymph rule my life

Well when i was diagnosed with the cancer i just decided to live and not let the cancer (same attitude as i have with the lymph) take over it helped a lot but then so did the care i was given the hospital i go to is one of the wrlds best in cancer and research

God's Good


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Postby joanne johnson » Thu May 24, 2007 12:09 am

Hi Silkie,
I was wondering where you were and missed reading your terrific posts. Did you think we wouldn't realize that you were MIA? Glad to have you back in the land of the living! I hope things improve for you and you can get back to where you left off.
You are an inspiration to all of us and it's just not the same when you are not around. Keep up the good work. Loving thoughts coming to you! :D
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Postby silkie » Thu May 24, 2007 1:28 am

Thank you so much Joanne
Its good to be back
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