Talking Frankly about Living with Advanced Cancer

Hello @jazzjen,
I also have a rare form of cancer, neuroendocrine tumors (NETs) mine is of the carcinoid variety. I have had three surgeries, 2003, 2005 and 2016. I understand what you mean when you say, "they say cancer is gone!!!! So why do I feel like it is not gone? I feel like it is still there waiting to take me down." I think of it as the "cancer cloud" and it can follow you around like a cloud if you allow it.

I take it that your lung problems are related to cancer or to the cancer treatment? Is that so? If so, it is very understandable that you would be very fatigued when you engage in regular activities of daily living, like taking a shower, cooking, etc. Without strong lung funtion, you can feel very tired, very quickly and this is normal.

My cancer and surgeries were in the upper digestive tract and so my post-surgery problems have more to do with food, digestion, concerns about absorption, etc. I am very fatigued as well.

The great thing about Connect is being able to connect with others without leaving your house and being able to sit while you do it! This is especially good when you have a low energy level.

Keep posting here on Connect. I look forward to getting to know you better.

Hi @jazzjen, I add my welcome, too. You asked if there are others with clear cell ovarian cancer on Connect. Yes, there are. Check out this discussion in the Gynecologic Cancer group (https://connect.mayoclinic.org/group/gynecologic-cancer/)
- Rare cancer: ovarian clear cell carcinoma https://connect.mayoclinic.org/discussion/rare-cancer/

You'll find discussions about Autoimmune Diseases here: https://connect.mayoclinic.org/group/autoimmune-diseases/

You also mentioned pulmonary rehab. I've seen members of the Lung Health talking about their success with pulmonary rehab and even special choir and harmonica groups for people with limited lung capacity. See these discussions:
- Pulmonary Rehabilitation https://connect.mayoclinic.org/discussion/pulmonary-rehabitlitaion/
- “Harmonica therapy” for chronic obstructive pulmonary disease https://connect.mayoclinic.org/discussion/harmonica-therapy-for-chronic-obstructive-pulmonary-disease/

Jen, has the pulmonary PT started to help improve your lung function?

Hello JazzJen.........my oral cancer is in remission. I have respritory issues and am on oxygen 24/7. I found it took several months to adapt to the oxygen therapy. I do feel I need more sleep or should I say naps. My sleeping pattern has definitely changed. Give yourself some time to get used to the oxygen.

I’m heading to Mayo today in Arizona. My doctors there are wonderful.
I am having my first recurrence of Ovarian Cancer and pretty scared.
I will be getting surgery and chemo. This time I think it will be Carboplatin and Doxil .
Has anyone had that and what side effects did you have?

Good luck. Sending positive energy. You got this!!

So glad to hear from you. Although this is difficult, you will be in good hands. I was given carboplatin in my frontline treatment, but I don't know anything about Doxil. Will your husband be with you during this upcoming appointment/surgery? You've described him as so supportive. Do let us know how everything goes for you. Is this a recent photo? You look lovely!

Sorry I didn't read your message until today. I've been very busy with family obligations which is a wonderful distraction for me. I, too, was diagnosed with clear cell about two and a half years ago. It is rare and most women you encounter on-line have HGSC. There is a group of women (of all ages with OCCC on Inspire) that is very supportive. I have done a fair amount of research on this particular histology and it is very frequently associated with endometriosis. You are fortunate in having supportive friends and family...it is very helpful. Why are you on oxygen? As for your fear of recurrence, I believe most of the women you will meet in on-line forum will express the same concern. I exercise a lot, do yoga and meditation, and surround myself by nature. And for me, learning about this rare condition has been important.

After Chemo, my short hair, everyone seemed to like it better! Just being kind I think.
Thank you for the reply.
I’m just trying to find someone who has had the combo Carboplatin and Doxil. Or even a different combination with Carbo. Best of luck to you teal sister. R

I had taxol with carboplatin for my frontline treatment, but I developed PN with the first round so it was quickly modified and then eliminated. With HGSC, I don't know what drugs are used (I have OCCC). Did you have germline testing as well as testing of the tumor? The treatments can be targeted with that knowledge, I believe. By the way, I think your short hair is quite flattering.

Hello @rochellewisner, I agree with those who say you look good in short hair. It is a great style for you!