Newly Diagnosed - Stage 1C - Advice?

Hello everyone,

My aunt was recently diagnosed with OC - high risk Stage 1C. She was having some pain and it was realized that she had a large tumor on her left ovary. She then had an "emergency" hysterectomy and the dr's said that they were able to remove everything that was visable but the tumor burst when they were removing it. There was however cancerous cells in the abdominal wash.

She starts chemotherapy next Thursday. I live in Boston and she lives in RI. I will be bringing her to chemo and staying with her as much as I can as she goes through this ordeal. We do not have any other family members in the area and she is not married and has no children.

She will be recieving three cycles of Taxol/Carbo Platinum. Is there anything that anyone recommends that I get for her/have handy to help her through what she is about to experience? Any advice? Any comments/insight you can give me for what to expect with chemo and its side effects would be greatly appreciated!

Thank you,

Kate
Boston, MA

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Hi, I am a cancer patient as well, stage IIIc. I am on Taxol now, but I was on Taxol/CarboPlatin and the Neulasta shot for 6 months. These tips woked for me.

You should have some (LEMON DROPS) hard candy. You can go to the local store or pharmacy to get them. These are good when the patient gets that metalic taste on their tounge because of the chemo. Also some home cooked chicken soup with veggies does the trick when she does not want to eat heavy foods.

Drinking lots of water is highly recommended to flush out the treatment given and to maintain proper kidney function. Vitamin B6 helps with the tingling sensation on her toes and fingers. If her hemoglobin is low, iron pills like slowFe will help as well.

Most of the time she will feel tired and rest is recommeded. Another tip, don't wear perfume. That will cause nausea. Any strong perfume, or strong smell will do that. Don't eat anything spicy. That will irritate the stomach. Drink 100% apple jucie or any kind of juice as long as its 100% juice. Why? because some of these juices contain High Fructose Corn Syrup and most cancer cells feed on sugar.

Also, call The American Cancer Society for information. They have pamphlets on ovarian cancer.

One thing though, please ask your doctor before taking anything.

Hope these tips will work.

God Bless,

Elizabeth
Queens, New York

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Hi Kate,
First of all, you must be a wonderful person to be caring for and worrying about your aunt, and she is lucky to have you. I am stage IIIC and have just finished another round of chemo after my first recurrence in 6 1/2 years.

The doctor and nurses that treat her will give you information, and most importantly will provide medications that will counteract side effects. Don't hesitate to tell them about every little side effect because they will expect to hear it and will help your aunt.

The chemo effect usually hits about 2 days after treatment. With Taxol, Carbo the cycle is every three weeks, so usually you start feeling better the week before you get your next treatment. She will be tired - and I found I couldn't sleep the night of treatment because of some of the meds. She has to learn to give in to it and rest. She'll have an unpleasant metallic taste in her mouth so no food tastes the same. Lemon drops, as suggested earlier, are good. Nausea varies by person but they will definitely give her a RX for pills (probably Zofran and/or Compazine). They are safe to take and she should not hesitate to use them. If she has a severe nausea problem there is Emend. I took that this last time and they work. You only get 3 pills per RX (day of treatment and the next 2 days) and they are expensive, but work.

She must eat well despite all this. Several small meals during the day sometimes work better than the basic 3 meals. I know I preferred ed soups and "real" food vs. junk food. It's also important to keep well hydrated - sip fluids all day long. There is usually a nutritionist available at the cancer center.

Prior to each treatment they will do a CBC blood test (finger prick) to be sure her cell count is at the right level because chemo plays havoc with that. Again, the doctor will give her mediccation to correct the problem (lowred cells make you extremely tired; low white cells lower your immune defense). I've always had a problem with low white cells and I got an injection of Neulasta 24 hrs. after each treatment to rebuild the cells. It causes bone pain for a couple of days, but that goes away - but it works and I had no delays in getting my treatments on time.

The chemo room has recliner chairs for patients, so they make you nice and comfy. Visitors are welcome to stay with the patient. This kind of chemo takes a long time. The first treatment will probably last 6 hrs. because they do it very slowly to be sure there is no allergic reaction. Subsequent treatments are a little faster but still take a good 4-5 hours, so bring something to pass the time. My cancer center has TVs at each chair, so that helped.They'll put in the IV line and start with4 small prep bags (anti-nausea, anti-allergy, Benadryl). They only take about 20 min. each. Then they do the Taxol and the Carbo drips.

Just be sure to report any side effects - rash/itching, sores in the mouth, tingling in hands and feet (neuropathy). Also, she must stay away from crowds and sick people since chemo lowers your immunity. They check your temperature all the time and it cannot go above 100.1 degrees. If it does, you have to call them immediately.

Hope this isn't too much info and I do hope it helps. Once you get the drift of the routine you'll be fine and have plenty of support from the staff at the cancer center. If questions come up, ask at this site because we all have much more experience than we'd like! And I do send every good wish to you aunt for a successful treatment and a very long remission. We are all here to support you in this. Keep us posted.
Very best wishes,
Jo

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Hi,

I was similarly diagnosed with Stage 1c and went through Carbo/Taxol. Some of the things that I found most helpful were saltine crackers, tea (green tea was my preference), white grape juice watered down, gingerale and wheat toast.

She will need lots of rest especially that first week after treatment. Maybe some movies she can watch, books to read, etc.

I read a book that I found very helpful through the process: Coping with Chemotheraphy by Nancy Brunning.

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Hi Kate,

First off, your Aunt's scenario completely describes my partner Lynn's scenario: pain, large cyst, detection in surgery with "spillage", and a diagnosis of 1C. I would expect that your aunt also had endometriosis, which presented the cyst with so much pain and which is also why there was spillage. That pain makes the cancer present earlier, so that is actually a blessing!

I don't know your aunt's age, but Lynn was 47 at the time of her surgery and in immensely good shape otherwise. Maybe that's the reason she's been advised to receive NINE chemo treatments (she's currently had seven), or maybe it's because Lynn's type of cancer was clear cell, a more infrequent but generally thought to be the most aggressive kind. The number seems high for us too, but the lowest opinion was six, and nobody came close to three. I would first of all recommend that your aunt get a second opinion on the chemo---Lynn actually got four opinions and decided to go with the most aggressive opinion she received.

As for the treatments themseves, everyone responds differently. Lynn feels awful the first week, but her nausea has not been much of a problem; it's aches and fatigue that are the problem, and of course the psychological challenges of both suddenly being thrown into menopause and losing all your hair and being obliged to take time off.

I think a nutritionist has really helped Lynn along, especially with her blood counts. We live in LA where there are lots of kinds of nutritionists from which to choose, even those who have worked with cancer.

Finally, I would especially watch the CA 125 numbers. They are likely to fall through all three treatments. If the fall is still precipitous after the third treatment, but not yet in single digits, I would ask the doctor if he or she feels comfortable that a nadir has been reached, and if not, why not continue treatments until a demonstrable nadir indeed has been reached.

Best of luck through the treatments and always.

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Dear Kate,

My wife was diagnosed with stage 1C ovarian cancer a month ago: bilateral (15cm in one ovary and 5 cm in the other, both endometrioid adenocarcinomas, one of them burst). Both ovaries, fallopian tubes and omentum were removed. The follow-up treatment is: 6 cycles IV+IP taxol and IP cisplatin (day 1 IV taxol, day 2 IP cisplatin, day 8 IP taxol). As in some other cases, this aggressive treatment was decided based on: young age (41yo), strong body/health, and commitment from both sides -ON-GYN and patient- to decrease as much as possible any chance of recurrence (Over-treatment? We will never know, but we all agreed on it).
She just finished cycle one and feels pretty well, with blood analyses showing very good body response. IP treatment itself is tough, but something that you can go through (according to her). Cisplatin’s strong side-effects were bad only the second day after the treatment (mainly pain). She is having some vaginal bleeding that would be consequence of the HRT, combined with a relatively low number of platelets resulted from the chemo.

My suggestion to you, as the caregiver, is to give her as much physical, psychological, and emotional support as you can and she needs. She is very fortunate of having you next to her in these moments, because your aunt most likely will feel scared and sad many times (even if she does not say so, she might feel it). Numbers are just numbers, but if she knows that the chances of not having recurrence after chemo when stage 1 are very high, that might help her to go through all this. It is good to be always positive with her and look for details that might help her: a silly one could be to remind her that next summer all will be done! or that 3 cycles will happen very fast (it depends on her personality some things might work better than others). As you mention, try to be with her as much is possible, in our case this has been very important. Also help her, but -as our case manager says- let her do as many things are possible to keep her moving as much the fatigue allows her (she has to avoid to be stopped all the time and has to keep her mind relatively occupied). You will have to be also extremely clean with everything (if you want more specific information, just let us know).

Important: take care of yourself!!!.. Your aunt will depend on you!. You have to stay healthy, strong, and mentally positive with yourself!. If you are up, she will be up –or maybe down-, but if you are down (or upset for whatever reason), she most likely will be down.

Good luck my friend!!!. You are doing a very nice thing and, even though you might not know it, we are here with you and your aunt.

Ivan

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Kate
Your support for your aunt is one of the most important parts of going through chemo. Reach out to her friends and yours to lend support. I found the Wellness Community out here in Northern California. I checked on the web and there is one located in Newton, Mass. Might be worth checking out.

I was diagnosed Jan. 07 with ovarian (stage 1c) and uterine (1b). My tumor was the size of a small watermelon. I had the hysterectomy, 6 sessions of carbo/taxol. I am back to my classroom teaching second graders. I wish the best to your aunt.

Before chemo, I headed off to the dentist to make sure everything was healthy ... the mouth can develop sores due to chemo. My dentist suggest Bioteen mouth was as well. Helps dry mouth.

As for actual chemo support, I really preferred having my husband with me each time. However, he brought much to keep himself busy because I often fell asleep during the treatment. The chemo nurses were excellent - chocolate for them might be a nice way to say thanks. I had very little in the way of side effects from carbo/taxol. The hair fell out exactly 14 days after the chemo. Within the week there was little left on my head. Caps, scarves, hats were great. They needed to be soft because my scalped hurt for awhile. I had been advised to get something like Ensure in case I was having trouble eating/smelling food. I never had any problems. The taste in my mouth was more like pepper. Constipation was a problem initially. Senokot solved that. I would also suggest trying to keep up on some walking every day. I started off with one lap around the park and worked up to 3 miles. I was able to do that most days during the months of chemo. Through the Wellness Community I was able to do yoga, meditation, Chi Gong throughout the weeks. I knew that everyone attending would not have a cold or contagious illness ... the immune system can be challenged by chemo. I was told not to do much gardening because of the bacterias in soil but I managed to take care of my potted tomatoes and herbs ... gave me something to do. I also had a massage (with an ok from my oncologist) every other week. It helped with the aches and pains in the joints that came with the chemo for me.

The biggest help to me was having friends and family drop me cards and e-mail. I loved having them visit (as long as they were healthy). The support group at the Wellness Community was vital. I was sharing and listening to others who were going through the same challenges.

Again best of luck to the both of you.

-Gail

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Hi Kate,

I agree with all that Nancy, Ivan & Gail mentioned in previous responses. I, too, commend you for your support of your aunt. She is so lucky to have you.

I was diagnosed with stage IC, grade 3 ov ca in July '06. I had surgery and 6 cycles of chemo (carbo/Taxol). The Biotene (and salt water) mouth rinses helped as did sucking on ice chips while I received chemo. I also was very careful about hand washing. My husband got a cold near the end my treatments when my counts were low. We used separate towels, both washed our hands compulsively and I did fine.

If you know anyone who knits - a really SOFT "chemo cap" is wonderful.... I worked throughout chemo and wore a wig. By the end of the day I couldn't wait to get home and put on one of the caps my best friend knit for me. They also kept me warm in the midst of winter here in Michigan.

Massages are also a great gift idea. My siblings bought me several gift certificates for massages. They were wonderful for the bone/muscle aches I had throughout treatment. In between I was lucky enough to have my husband rub my feet & back almost daily.

My husband & best friend also got me funny movies to watch and books to read. I really like SNL - so my hubby got me the 1st & 2nd season DVDs of SNL. He taped current shows for me as I slept through many of my favorites shows during treatment.

I was blessed with many gifts (flowers, journal - which I still use to this day and would encourage you and your aunt to consider starting...lipstick (I'm a make up freak), pastries, home cooked meals, etc. Still, I think the best "gifts" were the cards and notes I received, often from friends/acquaintances that I had not kept contact with or even total strangers (friends of friends/family).

I bought a plastic container and have kept every single card and note I received throughout my journey. To this day, when I am sad, anxious or upset after a long work week I look through those cards and my heart smiles.

Kate, I wish you and your aunt all the best.

Gayle

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Gayle

I am glad you shared that you saved the cards. I kept busy during chemo putting all my cards in a scrapbook. I added quotes, pictures, pressed flowers and such. On days when I was not feeling great, a quick review of the scrapbook reminded me how many people were wishing me well. Good medicine comes in many forms.
-Gail

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Thank you everyone for helping me and giving me some great advice. My aunt will begin chemo tomorrow so I will keep you all posted. I feel more prepared than I would have been without all of your help. I truely appreciate it. Best of luck to all of you.

Kate T.
Boston, MA

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You all are wonderful and make the planning for me so much easier. I love you all for sharing this and making the wait for the diagnosis much easier to deal with. Will let you know where I go from here. Staples come out on Wednesday. My surgery and treatment plan is being accomplished at Johns Hopkins - I am in good hands but still anxious. Hugs to you all.
Lani

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Kate,

I just wanted to check on your aunt.

I, like her, was diagnosed with Stage 1c Grade 3 (you said high risk; so, I'm assuming it was Grade3). My doctor is also recommending 3 cycles of carbo/taxol, and I had my first chemo March 19th. No bad effects -- just fatigue and muscle/joint aches, the hair is supposed to start falling out in a couple of days.

Anyway, please keep us posted on your aunt. I'm particularly interested since my treatment schedule appears to be mirroring hers.

Kindest Regards.

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