Endometrial Clear Cell Cancer: Looking for survivor stories and info

Thank you! The. Appointment is on 9/18.

I was having a moment. The staff at my doctor's office are callused. They forget that for many of us this is the first for everything. The Dr I'm seeing next week has written a lot on immunotherapy. I'm hoping he knows of trials I qualify for.

My current Dr who I do have a really good rapport with will be getting me into a trail to target HER2 as a maintenance. Either way I go I will have more
therapy after chemotherapy is complete .

@denisestlouie Oh, 9/18 is very soon. That’s great.

Your insight on how staff who work with patients with cancer become insulated from us. Yes, this is the first time for us and while we are not looking for outright sympathy we do want and deserve kindness.

The new doctor who is an expert in immunotherapy will hopefully fill you in on what’s available for you and with your current doctor you have an excellent team.

I want to encourage you with this. What you write here tells me that you are very aware of what you are feeling. You dig into those feelings to help you to move forward to get the best treatment options available for you.

I will check back with you next week after 9/18 so you let me know what you found out from the new doctor. Does that sound good to you?

Yes that would be great. I do appreciate that you have taken an interest in my situation.

I was able to have my second cycle of therapy last Monday. Today is Friday and this is my tough day, but it's not nearly as bad as I had imagined. I'm able to do most of things I want to do . I just lay down to rest throughout the day.

I don't know if I mentioned that I'm also using life style and complementary medicine to support my body as I go through chemotherapy.

The life style changes include physical exercise most days and I work with a trainer once a week. I'm following a metabolic syndrome diet. It's a very interesting low carbohydrates. When I prepare meals I'm focused on making sure I'm getting a great verity of plants, fats and protein. I find it to be fun in a challenging way. I'm also using a fast mimicking product for 5 days around my therapy. Research indicates fasting and fast mimicking help to reduce side effects from the drugs that are pumped in me. I am also working with a holistic Doctor. He is also a MD but mainly practices Functional medicine. I'm receiving magnesium infusion and vitamin B injections weekly. All of these things are being encouraged by my oncologist.

I have a full team of professionals that I picked to support me. They include the oncologist, holistic MD, dietitian, licenced clinal social worker who specializes in medical care, and my personal trainer who is part of a physical therapy group. I feel spoiled, but mostly I feel supported in a way I have never felt before when faced with a medical issue.

@denisestlouie Your life style changes are wonderful! It's great that your Friday was better than you've experienced in the past after your infusion. You have surrounded yourself with the experts that support you through this very difficult period in your life.

Like you I started to surround myself with support when I went through a recurrence two years after my original diagnosis. I was already working with a personal trainer and massage therapist but I've added an Integrative Medicine physician, nutritionist and therapy for couples counseling. I'm at a place right now where I'm going to add my own therapist to this support network. I also see an endocrinologist for osteoporosis and follow his recommendations including diet, exercise, and medication.

I pay out-of-pocket for some of these professionals because their services are not covered by insurance. I saved carefully for retirement and when I see what I spend I remind myself that all of this supports my health. There are days where I rest more than other days but that's OK too.

I'm so impressed with all that you are doing for yourself. Your efforts in this wraparound care is a model for others in what we all can do for ourselves during a most dark time in our lives.