Advice for Someone Newly Diagnosed

[Nefa-Tari_SHARE]

What do you know now that you wish you had been told when first diagnosed with endometrial cancer or uterine sarcoma?

What advice would you give to someone who has been newly diagnosed?

[Miriamn57]

How to use ice on your hands and feet during Taxol for neuropathy. Ice chips constantly using the baking soda and salt solution in my mouth all the time. Possibly connect with someone who has np Esn through it, info on support groups right from the beginning.

A list of your cancer team once you have cancer and before you go to treatment. Also, going to dentist before treatment.

[Lifemission]

I wish I had been told what a “round” of chemo really meant. I needed 6 rounds of chemo and thought I would have 6 sessions, once per week. Turns out a round was 3 sessions, so I ended up with 18 sessions of chemo, once per week, big difference! My advice: Make sure you get clarification up front about chemo schedule!

I wish I had been told about the possible side effect of chemo brain upfront. I thought I was experiencing symptoms of dementia at first! My advice: When your oncologist asks you how you are feeling make sure to tell him/her what you are actually feeling in your body. Tell them everything! Get a list of common chemo side effects and tips to manage them.

I wish I had been prepared for the fact that life doesn’t automatically return to normal when you’re done with treatment. I had to come to terms with my “new normal”. There are years of rest and healing that needs to happen after treatment.

My advice: Always get clarification! Ask a lot of questions and keep asking until you get the answers you need! Advocate for yourself!

[Miriamn57 in reply to Lifemission]

Great points... intriguing, a round for me was 6 sessions, one every three weeks. Mine is recurrent. I had three hours of taxol with 30 min of carboplatin

[Kibb Ambassador in reply to Lifemission]

A round of chemo can mean many, many different things. My surprise was not the number, but how long each session took. For me, each session was an 8 hour day - 6 hours for the infusions and 2 hours of travel. I had to pack a lunch because the cafeteria food was not appetizing. My support person went out for lunch each time.

[Kibb Ambassador]

I learned about "icing" from a focus group. My infusion center used plastic baggies which leaked so for 2/3 of my couple of sessions my feet and hands were freezing because my socks and gloves had gotten wet. By my 5th of 6 sessions I had developed a pretty good system using the ice packs I received every week from one of my medication deliveries and small frozen water bottles. I packed everything into 2 medium sized bed pans and took them to the infusion center in a small roller bag.

HANDS: Freeze water bottles. Put on latex gloves over the white cotton gloves. Hold a water bottle in each hand making sure your finger tips are in direct contact with the bottle.

FEET: Put on a pair of athletic socks. Pull on a large regular baggy over each sock.

Place ice packs flat in the botton of the bed pan. (I used 2 pans so I could move my legs around separtly.) Roll a baggy loosly filled with ice and place it at the top of the pan so your toes can wrap around it. Put your feet in the bed pan(s). Cover your toes and top part of your feet with a baggie filled with ice.

Note: Your feet will sweat and get cold, so you may want to bring an extra pair of socks if your infusions last a long time.

I tried to post photos to this message but it would only accept one image. I will send them to SHARE.

[Nefa-Tari_SHARE Partner]

Kibb great step by step instructions on icing treatment.