Chemotherapy - what to consider?

kittycat

Hello everyone,
I hope everyone is doing well.
I am 48 years old and had surgery on Sept 6th where they found cancer and they did a hysterectomy.  I had a follow up with the doctor at Princess Margaret yesterday and he recommends 6 cycles of chemo. This is all happening fast and I  am unsure if so many things. I have stage 1,c, clear cell. There was so much information from the Doctor but he said the my cancer is rare and can be aggressive and there can be a recurrence. He said chemo may help some but I go back and forth on what to do ...or take no chemo. 
I have anxiety and I am afraid of throwing up and of hair loss and some of the other side effects.
Do I take both drugs (carboplatin and taxol)?
It is effective if I take only  carboplatin?
How do others make their decision?
What things should I be considering?
Thank you,
kittycat

cathy1960

Hello Kittycat
I just turned 57 years old.  I had my surgery November 2, 2016.  Once the pathology report came in a month later, I was told the same thing I needed 6 cycles of chemo carboplatin and taxol, I was diagnosed with stage 3C very aggressive.  The doctor stipulated how important it was for me to receive the chemo.  I agreed, I had to have a picc line installed in my left arm for the chemo to be administered.  I was also concerned about the side effects.  The nausea is controlled very well with the medications they will give you.  Make sure you take them as soon as you feel it before the vomiting begins.  You will feel fatigue rest if you have to.  Take naps.  One side effect that lasted my entire chemo was my sinuses were always congested, I took care of that with sinus rinse.  You may get discoloration on your hand and toe nails, for this you can wear nail polish to cover them.  I also had weight gain, since I had lost 14lbs after the surgery it balanced off.  Besides the weight my worst side effect was the hair loss.  I bought 2 synthetic wigs and a real hair one before my daughter shaved my head on new year's eve.  The hair falls out and thins out so it is better to just shave it off.  I wore the wigs anytime I left the house or had company.  I also wore scarves and hats.   You really will get used to it. For my eyebrows I learned to draw them on myself every morning, not so bad either I got really good at it.  I wore makeup when I wanted to.  My chemo ended April 13, 2016.  My hair is growing back full, it is still very short will take a long time to get back to my length, as for my eyebrows they were not growing back fully, so I decided to get permanent makeup.  I had them done last week and very pleased with that decision.  I wish you all the best and make the decision that is right for you, but remember you can overcome anything you just have to learn to work with it. Good Luck!

Marilyn

Hi @kittycat.  Thanks for starting this discussion!  Its a difficult decision particularly if the doctor seems uncertain about the effectiveness of the chemo.  Here are some other women who were diagnosed with Stage 1 disease.  @jemgirljeri @KarenL @kastoyles @jiselle16 @sunshine and @jojo305 .  They may have some insights about how they made decisions around this. How long do you have to make a decision?

CurlyHair

Hello Kittycat

I have received many rounds of carbo and taxol chemo with a debulking surgery.  I have found that it helped me.  I did not have too many severe side effects.  They will give you steroids and anti nausea to counter issues.  I think you should discuss it with the doctor and others around you.  Write down your concerns and take them to the doctor or your GP if you have one.  Ask them.  I have had a recurrence.  Recurrence is common with ovarian cancer in general.  Good luck and keep chatting in the future.  

meganG

Hello Kittycat,a difficult decision however in my case they told me what my option would have to be(stage 3b)so I had carbo and taxol.They control the side effects well and I had no problem with nausea etc.My hair did fall out but wigs have come a long way and many people did not know it was not my own hair.If you can go to a "Look Good Feel Better " program that might help and they give you alot of makeup and skin care tips.Usually offered thru a hospital or cancer clinic.What made me feel better was to start off my day making myself feel good, -get up ,wash your face and put your makeup on.Refuse to be negative.All the best we are all rooting for you.

kittycat

Hello,  Thank you for the feedback, I found it very helpful.  It helped me make the decision to go ahead with chemo.  Better to be on the safe side.  I will make the best of things and keep a positive attitude and use the time to do what I love.  Arts and crafts.  As well I am going to try to figure out something else I could do for a living.  Thanks for all the kind wishes.  I wish everyone good health and happiness.  Kittycat.

kastoyles

I too have Stage 1C Clear Cell. The pathology showed a small breach from the tumour to the outside and chemo was recommended because of the possibility of cells in my abdomen. I struggled with the decision to do chemo as well. I didn't feel sick! My hysterectomy cleared up the pain I was having and I was on the road to recovery. My GP said I needed to be as aggressive as possible. My  husband was all for it as it would give me the best odds. Up until the time the IV needle went in my arm, I was still undecided. But I went ahead with it. I was really surprised as how well I felt through the span of 6 rounds. Yes I was fatigued, my legs ached for days, I lost all my hair (actually I shaved a week after my first treatment - it was one thing that I could control!), but I did it. Above all TAKE YOUR DRUGS FAITHFULLY!  They are prescribed for a reason - they will help you get through the treatments with as little discomfort as possible.

Drink Water! Be sure you are well-hydrated before your treatments and drink what you can afterward to help your body flush the toxins. I noticed a big difference between the times I was well-hydrated and the times I wasn't.

Senokot became a good friend of mine. I constipate easily and the drugs you take will cause constipation. Water, fibre and Senokot....

I had a nap every morning and one in the afternoon for the first four days or so after treatment. As they went on, the fatigue became more pronounced.  I would hit a brick wall and just had to lay down, not necessarily sleep, but lay down, warm and toasty, close my eyes and chill out for a while. Hubby would remind me every day to lay down for a while. The body needs time to heal and fight the assault that's going on with chemo. Listen to your body. Don't try to be a hero and push yourself beyond what your body can handle.

You can do it!

kittycat

Hi your comments have really helped me.  I prefer to do only carboplaten but will see.  I am only 3 days into my first chemo treatment.  I feel quite tired and not much appetite and a little nauseous. Pills work though.  My husband is taking time off work to be with me.  I’m lucky!  Kittycat

kastoyles

@kittycat Listen to your body...  and your husband!!  LOL Mine was an angel - he did everything, all I had to do was rest, eat and heal.. The six rounds will be over with before you know it.

midcanada

What chemo drugs have you been on?  

I am interested in your treatments because it seems that the American and British support forum members have such a wide variety of chemo drugs being used.  

Do we Canadians have the same options?

I have had nine cycles of Carboplatin and Paclitaxel as front line treatment.

kittycat

I had a hysterectomy and 1 carboplatin.  Might go with placlitaxel as well for remaining cycles.  I was diagnosed with stage 1 clear cell ovarian cancer.  

CurlyHair

Hello @midcanada regarding the amount of drugs I can say that as far as I know Health Canada does not move as quickly to approve drugs even though the FDA has approved some of them.  Regarding the PARP inhibitors Canada has approved one so far for some people while FDA has approved 3.  We have the funding side to it as well.  Publicly funded.  

kastoyles

@kittycat I did both carbo and taxol for all six rounds

Marilyn

Hi @midcanada.  Generally speaking, the standard drugs that are used for front line treatment in Canada are Carboplatin and Paclitaxol.  This may vary depending on individual circumstances but these two drugs are usually where treatment starts along with surgery. If the disease recurs, these drugs may be used again as they are the preferred ones.  If not, there are other drugs that are available to use with recurrent cancer or cancer that does not respond well to the platinum drugs.  This will vary depending on the individual situation.

How are you feeling about upcoming CT scan?

jan0927

I'm still waiting for pathology/staging results (over 5 weeks now) but I understood my gyne oncologist to say in the hospital that it could be Stage I with no need for chemo. It seems there are a few here that were Stage I and still had chemo? I wonder if different Drs have different recommendations? I would rather err on the side of caution and have chemo, than regret it later.

Marilyn

Hi @jan0927. Yes, it can be confusing when talking about treatment for Stage 1 disease.  It can depend on each individual situation, the type of ovarian cancer, the grade of the cancer, the substage of the cancer (stage 1a, 1b or 1c) and what the doctor might recommend.  For example, several of the women above have stage 1 clear cell ovarian cancer.  This type of cancer may be more aggressive than other types which could be why chemo is recommended.  If the cancer is completely contained and removed through surgery, the doctor may not recommend chemo.  This is the kind of conversation your doctor will have with you when your results are in.  You can ask why they are making the particular recommendation and let them know your thoughts too.  

If you have received a copy of By Your Side, which is a guide we publish for women recently diagnosed with ovarian cancer, there is a section on page 41 that has a list of questions to ask the doctor regarding your diagnosis and treatment recommendations.  If you do not have the book, you can order it online at 
http://ovariancanada.org/living-with-ovarian-cancer/support-resources

If you do not have By Your Side, let me know and I will post these questions here for you.

Flowergirl

Hi @KarenMari53 - I had carboplatin and paclitaxel as treatment.
Day of the treatment was ok, just tired  (they gave me benadryl to prevent reactions).
It is post treatment when the side effects showed up. Joint stiffness was my side effect - I felt like "Rusty the tin man"
Movement, such as walking and light exercise seemed to help.

KarenMari53

Hi @Flower girl.... Thank you...someone else said they did 6 rounds with little side effects. It is helping me relax, I have done research on diet, etc today so I can go into this educated and ready. Anybody continue working? I work as an administrator/ bookkeeper and hope to keep up for the 6 cycles. My employer (my church) has been amazing.

Flowergirl

Hello everyone and
@UnPickNot
@Teddybear
@Soni
@pattiezee
Wondering if you can share your recent experiences with Cisplatin - asking for a participant in our in person support group?