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Pleomorphic-sarcoma mixed malignent mullerian tumour. Pleomorphic-sarcoma mixed malignent mullerian tumour.

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Unread 04-29-2003, 03:32 AM
Pleomorphic-sarcoma mixed malignent mullerian tumour.

Hi Everyone,
Thanks to all that e-mailed me. I am still doing ok 10 days after first treatment but the hair has started to go. The amount left behind in my brush sometimes looks more than in my head now.
Never mind.
Is there anybody here having the same chemo as me?????
It's Doxorubicin and Ifosfamide. Would love to hear from you and compare side effects etc. I feel to start losing my hair after 10 days seems rather qiick. The chemo nureses told me it could be 3/4 weeks.
Another thing........over on the Hystersisters site someone said that the treatment for my kind of tumour is not as bad as some.
I did write and ask where and how she obtained this info but as yet had no reply.
Hoping everbody has a good day!
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Unread 04-29-2003, 11:32 AM
Pleomorphic-sarcoma mixed malignent mullerian tumour.

H, Jennimarie.

Have you been in touch with Lenasepiel? She was just diagnosed with a mullerian tumor, but I don't think it was the "mixed" kind. You two might want to talk. She did say that from what she's been able to find, the treatment does appear less rigorous than that assigned to other types of cancer. Her doctor is on holiday, though.

I started losing my hair on Day 14 after treatment. On Day 13, I noticed just a few hairs fall through the day (may 20 total). On Day 14, I woke up and it was clear that my hair was starting to not want to stay on my head. The key is to cut it super short, then shave it when necessary.

Seashell sent me a book whose author had lost all her head hair AND body hair by Day 9 after her first chemo treatment. So I think it just depends on the person.

I'll be interested to hear how your experiences with Doxorubicin go. Many s for you as you join the bald club. :-) I'm a new member, and . . . a hat helps. If you're up for reading, I enjoyed a book called "Bald in the Land of Big Hair." It's a novel based on the author's experience with Lymphoma. She is a great writer, and I enjoyed the book.
Unread 04-29-2003, 12:18 PM
Thank You.

Hello Sirensong,
How are you feeling?????
Isn't this a nightmare at times? If we didn't laugh we would surely cry!!!!!!
I think I can cope with the hair loss so long as it goes quick, so I can be one thing or the other not in the middle so to speak.
Forgive me, but I cannot remember what type of tumour you had although you have 'spoken' to me before on line.
I would be interested in knowing your type of chemo regime too.
We all have to stand together in this and help each other so please tell me your story if your'e not already sick of telling it.
It was lovely to hear from you again and yes I have bee in touch with Lena thank you.
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Unread 04-29-2003, 12:20 PM
Pleomorphic-sarcoma mixed malignent mullerian tumour.

Hi Steph,

There are two people with your type of cancer over on yahoo. I too am there as my Cancer is in the same "group" as yours.
We would love to have you join our group. Type in endometrialstromalsarcoma , be sure you type it just like that.

Lena and the others will welcome you. Tell them Lori sent you!
Two of the gals in that group are from England!
Unread 04-29-2003, 01:11 PM
Pleomorphic-sarcoma mixed malignent mullerian tumour.

Dear Jennimarie,

Thanks for your sweet note! I am doing much better during this round. See my note about this chemo experience elsewhere on the board. I am now cranky that I didn't know more before going into the first chemo, as I could have avoided pain that made me think I was going to die. The changes we made for the second treatment really helped, and I'm now confident that I can get through the next four cycles.

I think my tumors were epithelial, and the overall situation is ovarian cancer Stage 3C. The path report doesn't note the type of tumor, but I distinctly remember the doctor saying that's what it was. My chemo regime is Taxol and Carboplatin, once every three weeks for 6 cycles. The doctor said he sometimes pushes things to 8 cycles, depending on how the patient is doing. But he doesn't make that determination until later in the process.

I actually liked my pixie cut, since I've had the same darn haircut for about 1 years. A lot of people said, "You HAVE to keep it that way when it grows back!" Not sure about that, but it certainly won't be shoulder-length anytime soon. :-) Before chemo, I cried a lot when I thought about losing my hair. Now, it's not that big a deal. All I care about is being able to make it through the treatments without feeling too much pain. :-)

Dear Lori,

So glad that you have been helping out Lena and are now reaching a hand out to Jennimarie. When Lena let me know what was happening with her, I instantly began researching her situation . . . only to find that she'd already been anyplace I'd found that appeared helpful. It's hard when you have a rare condition, but she's mentioned that the Yahoo board has been very helpful to her.

By the way:

The author of "Bald in the Land of Big Hair" is Joni Rogers. I forgot to mention that in my earlier post.


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