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1st chemo treatment-need help

pattie444
Posts: 5
Joined: Oct 2009

I have Stage lll-C clear cell endometrial carcinoma and am having my first 6 hour chemo treatment on Tuesday Nov.17th. I will be getting Taxol and Carboplatin. Are there any opinions about getting a port put in because I will be getting at least 6 more treatments. I was also wondering if anyone has had this type of cancer and only got 1 treatment(for whatever reason) and the cancer never came back. Also, if someone only got 1 treatment and their hair never fell totally out. I hope everyone is doing well and that someone can help me with my questions. Thanks! Pattie

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

I remember having these questions when I was recommended to get port by my doc at beginning of this journey over a year ago (I have stage 3a papillary serous endometrial cancer). I found that most people liked the port so I got it.

I have NEVER regretted it. I still have it and intend to keep it for awhile (my last chemo was 9 months ago) since my cancer is notoriously recurrent in nature. So far I have not needed to use my port, but it does not bother me to keep it aside from the flushes needed every 6 weeks. I consider it my good luck charm.

To sum up, I think you are better off with a port than without one.

Best wishes, Mary Ann

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

I like having a port; it makes chemo so much easier. I still have it since I finished chemo 5 months ago. It does not bother me at all.

I don't know anyone who was cured after one chemo treatment. They try to study in clinical trials how many chemo treatments are needed. It is best to "hit the cancer" when cells are dividing; they may not be dividing at that particularly first one. There still may be cells. I have read that the first three treatments are the most effective. Each time you have carbo/platinum your hair falls out. If you have just one the hair will fall about five weeks after treatment and then start to regrow in about four or five weeks. Usually by then you have had another treatment and the follicles go through the process again so you don't see hair regrowth. I think it's easier to buy a wig before you lose your hair; then you can match color. Some women just wear big scarves or hats. Some just put big earrings in and go bald. Mine is growing back in; I finished chemo in July and haven't need a cut yet for shaping. I think it is harder to lose your eyebrows and eyelashes. There are many tips in how to cope. The American Cancer Society has some demonstrations on line about how to do make up when you're going through chemo. Also, if you search the threads on hair loss you can fine what other women have done to cope. Before your hair falls out it gets very sore; to avoid this I just shave my head all at once and switch to my wig and scarf. I think this is less stressful. It grows back. You are going to have a better prognosis if you take the number of chemo treatments your oncologist prescibes. It is not easy but you can do it and there is alot of information out there on how to cope.

Best wishes and you can do it! Diane

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I never got a port put in, figuring that I have 2 arms, and would be getting a 3-week break between chemo infusions. By my 4th chemo, my blood counts started going down too low to get my chemo after a 3-week break, and I needed to get a blood transfusion each of my last 3 chemo rounds and wait an additional week between chemo treatments. The additional testing and the blood tranfusions really added to the number of needle 'sticks' I had to endure, and my veins began to get hardened with scar tissue from the chemo. I started wishing I'd have gotten a port put in originally, but by then my platelets were too low for me to have the surgery to have one put in. By the time I was ready to start radiation and needed a CT-scan, they had to call in the hospital's "IV-Team" to get a needle in my vein for the IV-contrast.

Sooooo, I guess I'm advising you to get the port. BUT, I must say, now that I am in remission and out of treatment, my veins have recovered and they get the needle in first try for my blood tests now. And I don't have a port now to worry about getting infected or to have flushed. So now I'm glad I didn't have one put it. (Take this as a mixed review! HA!)

ABOUT THE HAIR LOSS: Even if you only have 1 round of carbo/taxol chemo, you will probably lose all of your hair. Mine was already coming out by the time I had my 2nd chemo infusion. I remember that I had my first chemo November 10, 2008, and was bald by Thanksgiving.

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Hi, Pattie!

UPSC Stage
I was staged at I-A. Only 9 lymph nodes were removed at the time of my hysterectomy. I did not think that was a large enough sample of lymph nodes to feel confident about the UPSC stage. At the time of my hysterectomy my gyn/onc only knew I had Stage I-B adenocarcinoma of the endometrium. He was not expecting to later find out I had UPSC. The UPSC diagnosis came a month after my surgery.

Port
I had a groschong catheter put in (under general anesthesia at the hospital - by my gyn/onc) the day before my 1st round of chemo. My body never really got accustomed to it in that I had an ongoing very local infection and I cleansed the area with peroxide daily. Bloody fluid backed up into the tubing every 2 to 3 days, so I flushed it myself with fluid-filled irrigation syringes provided by my gyn/onc. At my first post-chemo visit with the gyn/onc last week I requested that it be removed, and he pulled it out. In spite of all this, if I need to have chemo again, I will request some kind of port again - even this same type would be OK with me.

Chemo
I had 6 rounds of carbo/taxol on schedule (approx every 3 weeks) with no delayed treatments and no transfusions needed. I had no adverse reactions the day of chemo other than needing to go home and sleep the rest of the day and needing to be driven home from the therapy because I was so groggy. Each infusion session lasted about 4 hours. I did experience nausea, constipation and diarrhea (go figure!) the week following each infusion, and I experienced a great deal of fatigue all during chemo and ongoing memory problems. I experienced peripheral neuropathy beginning during I think the 3rd round of chemo. I continue to experience the fatigue, the memory problems, and the neuropathy. My last infusion was October 8. Two to four days prior to each infusion my blood was drawn to be sure I was OK enough for the next round of chemo (i.e. levels not too, too, too low or high). My WBC, RBC, HGB, and HCT are still low, but my platelet count has always been OK even though it steadily dropped from treatment to treatment. Hopefully my blood counts are now improving week by week!

Hair loss
I lost most of my hair before my second infusion (I think about 2 weeks after the 1st infusion), and I had lost the few remaining strands before the 3rd infusion. I remember standing in the shower crying the first time large clumps came out as I was shampooing my hair. I had not expected I would take the hair loss quite as hard as I did. It is still very strange to have no eyelashes. I have a few bits of eyebrows. I recently pulled out a few long dark eyebrows that looked very strange with the rest of my eyebrows missing. I was able to pull them out with just a quick tug using my fingernails - no tweezers required - so I could tell the roots are still not very strong. My hair is just starting to come in again, but it is a strange, thin, Brillo-like substance. I am strongly considering shaving this strange stuff off once I sense that hair with a more traditional texture is coming in. Following my third infusion, I picked up a free wig at the local American Cancer Society's "wig closet" - sort of like a library, but one checks out a wig instead of a book. It is a much nicer style and much thicker than my real hair was, and it is less gray. I have received many compliments on it!

Questions?
Please never hesitate to ask ANY questions on this forum. We are eager to share both experiences and information.

Good luck making important decisions with only a short time for mulling things over!

Sally

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

I considered being a member of this clinical trial, but with my history of ongoing diverticular disease, I decided that Arm I would be too risky for me. Also, Arm I did not include chemo. Arm II had only 3 rounds of chemo, and my local gyn/onc was advocating 6. I hope I am alive to see the outcome of this clinical trial because the optimal number of rounds of chemo to successfully treat either UPSC or clear cell at ANY stage has not yet been determined. The closest location for me to participate in this trial was Oklahoma City.

Basic Trial Information

Phase Phase III
Type Treatment
Status Active
Age 18 and over
Sponsor NCI
Protocol IDs GOG-0249, GOG-0249, NCT00807768

Phase III Randomized Study of Pelvic Radiotherapy Versus Vaginal Cuff Brachytherapy, Paclitaxel, and Carboplatin in Patients With High-Risk Stage I or II Endometrial Carcinoma

Outline

This is a multicenter study. Patients are stratified according to extent of surgery (hysterectomy and bilateral salpingo-oophorectomy without lymph node sampling, lymph node dissection, or lymphadenectomy vs hysterectomy and bilateral salpingo-oophorectomy with lymph node sampling, lymph node dissection, or lymphadenectomy). Patients with stage II disease or stage I disease with a confirmed diagnosis of clear cell and/or papillary serous histology who are randomized to arm I are also stratified according to intent to use vaginal cuff brachytherapy (yes vs no). Patients are randomized to 1 of 2 treatment arms.

* Arm I: Patients undergo conventional or intensity-modulated pelvic radiotherapy once daily, 5 days a week, for 5-6 weeks (total of 25-28 fractions) in the absence of disease progression or unacceptable toxicity. Patients with stage II disease or stage I disease with a confirmed diagnosis of clear cell and/or papillary serous histology may also undergo 1 or 2 intravaginal (i.e., vaginal cuff) brachytherapy boost treatments.

* Arm II: Patients undergo vaginal cuff brachytherapy comprising 3-5 high-dose rate brachytherapy treatments over approximately 2 weeks or 1 or 2 low-dose rate brachytherapy treatments over 1-2 days. Beginning within 3 weeks after initiating brachytherapy, patients receive paclitaxel IV over 3 hours and carboplatin IV over 30-60 minutes on day 1. Chemotherapy repeats every 21 days for up to 3 courses in the absence of disease progression or unacceptable toxicity.

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

I had stage III-C Endometrial Uterine cancer so I had total hysterectomy and 33 lymph nodes removed. I was suppose to have 4 rounds of chemotherapy treatment last June 28th with 3 chemo drugs (I forget the names of three different drugs) they were 2 hours for each IV drug so I had 6 hours of the first treatment. One week later I had bad reaction from one of the IV drug that caused my colon inflamed and infected which is very very rare. I had antibiotics for the infection and given blood transfusion.

I decided to shave my hair to 1 inch cuz I didn't want to pull out my long hair so it's easier for me to accept the hair loss. My doctor said that I will lose hair after 14 days and he's right. I lost all of my hair after the first treatment. It wasn't bad that I thought. I didn't have 2, 3 or 4th treatment cuz of the infection so my doctors decided to stop it and focus on my stomach recovery. So far they haven't find any cancer cells from my ct scan but not sure if I need radiation. This Monday I will find out if I need it or not.

I would suggest for you to follow your doctor's order to complete your treatment so that way you don't have to worry if the cancer will come back or not.

Btw I have the port on my upper right chest and it has been useful. I plan to leave it there for a while cuz there are other patient who had it for 5 years if it's well taken care of.

I wish you have a good support during your first treatment with your family and friends!

hugs, Reddie

pattie444
Posts: 5
Joined: Oct 2009

Thanks to all of you who posted replies to my questions about my 1st chemo treatment.( hair loss - port - effect of just one infusion ) You all gave such informative, upbeat, and helpful advice to me. Especially since you have all been through this. I will definately carefully consider all the information you have given me. I cannot thank you all enough. Maybe someday I can help someone else after I go through this. I appreciate you sharing your stories and especially your positive attitudes. God bless you and I hope you are all doing well. Pattie :)

Linnie
Posts: 4
Joined: Nov 2009

Hi Pattie!

I was stage IV with Uterine Cancer and after 6 Chemo's my CA 125 blood test went from 825 before surgery to 7 (the average person without cancer is about 30) and my PET CT Scan was normal (no cancer cells)!

Their are 3 kinds of ports: the one outside your arm which can never get wet and needs flushing weekly, the one surgically placed in your chest, and one easily surgically placed in your arm (called a "passport"). The last two allow you to take showers easily and let you swim. Also, the last two only need to be flushed out every 4 weeks (if you don't have chemo within that period).

I had the passport inserted and it was painless. You lay on a surgical bed and the doctor gives you some small needle shots of novicane (tiny prick - much less than what is felt at the destist office). After that you don't feel a thing! The doctor makes 3/4's of an inch slice in your upper arm and insterts the passport and a small tube that goes from your arm to your chest (which you don't even feel) and then tapes you up - no stiches. It took about an hour with all the sterile prepreations. The doctor has two like x-ray machines that he can see where the tube is going and where the insertion is. It was then so easy getting my 16 hours of baro/taxol chemo and whenever they needed to draw blood.

My long hair fell out slowly. I had 6 chem treatments every three weeks and after the 6th one I was totally bald (took 5 months) - everyone is different.

- Linnie

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