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Need help with chemo info

pattie444
Posts: 5
Joined: Oct 2009

I am 41 years old and I have aggressive stage IIIC uterine cancer. Had a radical hysterectomy 2 weeks ago and am supposed to start several treatments of chemo next week, followed by radiation. None of my 'cancer team' can tell me what kind of chemo I will be getting, only saying it will last about 5 hours every time. I am so scared because I don't know what to expect. I am still in a lot of pain from my surgery and I don't know if I can handle chemo at this point. Any help or advice you can give me would be greatly appreciated. Thank you.

npl8261
Posts: 33
Joined: Jun 2009

Very sorry to hear about your cancer. I got diagnosed in Feb. 09 with Stage IIIC Endometrial Cancer. I went through surgery, 6 rounds of chemo (once every 21 days) with a combination of CarboPlatinum and Taxol. After chemo I needed to wait about a month before I started 25 External Radiation treatments then on to 4 internal radiation treatments (Brachytherapy). I am 43 years old with two small children. Uterine/Endometrial cancer is rare and it is even rarer in women our age. My Obgyn Oncologist out of the Boston had me get Genetic Testing which showed I have a gene that caused my cancer. The gene is linked to Colon Cancer as well. The gene is referred to a lot as The Lynch Syndrome.

As for Chemo, I would go on a Monday and be sick for about 7 days then I would magically feel better. I did have a stronger reaction than most, at least according to my nurses, and was put on EMEND. There is no doubt that chemo can be rough but it is do able and you are young enough to bounce back. I would suggest you look into acupuncture to help deal with the side effects. I didn't go to acupuncture through chemo but did start going when radiation started. If I had to do it again I would have started acupuncture with chemo.

I wish you well. I think you will find this board so helpful and supportive.

Linnie
Posts: 4
Joined: Nov 2009

Hi!
I read that you had internal radiation. I had stage IV uterine cancer and after 6 chemo treatments my CA is 7 and my PET CT Scan is normal. They want to do 3 internal radiations and it sounds very intrusive to me. Also, the Radiologgist told me that after the radiation I will have to do vagina excercises 3 times a week and insert some item in my vagina 3 times a week the rest of my life. He said it I don't do this the scar tissue from the radiation will close up my vagina. Did your doctor tell you the same thing? Are you doing these exercises?
Linnie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I had internal radiation often called brachytherapy. They insert something that looks like a curling iron into your vagina. It is not painful. They lined me up with a CT scan. I had six treatments, three were aimed at the cuff. I did not have external radiation. I have a vaginal dilator I put in for ten minutes daily. It is simple and not painful. My Doc said intercourse is really the best dilator. I don't do vaginal exercises though. The vaginal radiation is really nothing to be afraid of.

Diane

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Hey, how can you be reasonably informed if no one tells you what kind of chemo you'll be getting??? What are they thinking?? Most likely it will be what everyone else gets, but if they can't spell it for you and explain all the possible side effects and things to look for, and possible consequences you are not an informed patient. Gently insist they write it down for you. If that doesn't work, go to the hospital administrator and tell her you need assistance in getting knowledge for an informed consent decision. I just woke up, so this may be a bit off. basically don't accept "dah??? I don't know." if they don't know what it is, how will they know where to stick it?????? and if they're treating you like a stupid girl, well, I can't even go there. You might mention that they are not what you expected God to look like.

Love you,

Where are you?? I'm not doing anything for a bit.

Love,

dah? told you i was tired,

claudia

pattie444
Posts: 5
Joined: Oct 2009

Thanks for all of your wonderful replies. I think I will go to the hospital administrator and speak with her. I am usually not so passive when I don't get the information that I need or want. I think I am just weakened by the shock of my diagnosis and surgery. After reading the replies I feel so much more empowered and hopeful. I have no insurance so I am basically a charity case, but this should not matter. I am still a viable human being and should be treated like one. I will definately take your advice and be very well informed before giving my consent for chemo, and I am going to look into a second opinion for my treatment and maybe even find another doctor. Cancer is serious and I need to take a more proactive role in my treatment. Thanks again to all who replied. I truly hope you are all feeling well and wish you all the best. Love, Pattie p.s. I live in New Mexico.

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

I have stage 4 b grade 3 endometrial cancer, and was given 6 treatments of cisplatin, andromisin taxol sorry for bad spelling, no radiation, the docs at U of michigan said they would have treated me with this also,
having doctors that do not know what chemo they will use, would scare me too!! I would go hunting for someone who can tell you. I was with a doctor that was a good surgeon, good at diagnosing cancer and chemos, but bad with bed side manner , I thought I had no choice being on medicade but found I do have a choice and changed doctors , look around please. my chemos took 6 hr for first day and 4 to 5 for second day. it is now a waiting game for me. praying for you!!!

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

you know, I know I should know this, as a grade 3, are you uterine pap serous carcinoma, clear cell or something else?

I think I emailed you earlier. Been a frantic day.

REally, really happy you were finally able to get a good team together to lessen some of your anxiety over treatments.

Love ya,

Claudia

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Patti,

I agree with Claudia. Your team needs to respect and include you as a member of your treatment team!! I remember getting fact sheets from my chemo nurse prior to treatment. You will sign consent for all your treatments and need to be informed about what they are putting in your body.

Don't be embarrassed about being assertive. You are setting the stage for how you want to be treated as a person - not just a patient.

Blessings and peace to you. Mary Ann

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Copy this column and tell them that you have the right to know what type of medication you are getting. Tell them we will all be at your hospital door step waving patient signs. A law was passed called "Patient Rights." Be sure and mention that. We have to walk a fine balance between being a patient and an advocate for yourself. You can't let not having insurance mean you don't get the information you need. Trust me; they will work out a payment plan.

When I had breast cancer I was in a study BRC 27. I did it for my daughters. You don't have to pay for any medication in the study. We certainly need more uterine cancer research. I wonder if someone could direct you to a research study. I am so glad I did it.

We all react differently to chemo. It was tough to start right after surgery. I had a reaction to taxol but there were different medicines to help me cope. I had to take higher doses of steroids and for longer periods. I had to take pain medicine for seven days and nausea medicines. I had to take medicines to sedate me. But I made it. And now have hair too. Take this one step at a time. We are here behind you.

Diane

susancherie
Posts: 5
Joined: Oct 2009

It's all a tough road to walk but we walk it anyway because we hope to be one of the ones that survive long-term. I had my surgery in april 2009 and did 4 round of chemo, followed by radiation and then 3 rounds of chemo. Finished it all 2 weeks ago. I decribe chemo as a bad roller coaster ride-- I usually felt really bad for the first 10 ten days, then kinda bad for 4 days and then pretty good for a week. The Newlasta shot (to boost your white blood cells) was only really bad (lots of bone pain) the first time I got it but I've heard that varies person to person. Radiation was horrible for me ... but focus on getting through your chemo first. Just focus on what you've got to survive for today. When I first started treatment seven months seemed sooooo far off, but now i'm done. Hang in there!!!

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