Ovarian Cancer Complication

[jpwildflower]

Good Morning,

My mother is 60 years old, diagnosed in April 2002 with stage IIIC Ovarian Cancer - which a complete hysterectomy and 6 months of Taxol/Carboplatin cured. In 2005, she was also diagnosed with Chronic Lymphocytic Leukemia (stage 0 - no treatment was needed apparently).
A retroperitoneal mass (originally measuring 8cmx5cm) was discovered in June 2009 - and it was confirmed as a recurrance of her Ovarian Cancer, including lymph node involvement.    She started on the Taxol/Carboplatin again in July, but was switched to Gemzar in October after the Taxol/Carboplatin proved ineffective.  After 8 months of treatment, though the tumor has now shrunk to 4cm x 3cm, her lymph nodes (right axial and left inuinial - not sure of the spelling) continue to go up and down,she is also now suffering from severe lymphedema (gained 15 pounds of fluid weight in her legs in 3 weeks).  Her most recent PET Scan showed sclerotic lesions on three vertebrae (T8, T9, S1).  Her Oncologist has been with her since the beginning, but is part of a very busy practice, and seems to show little concern for the lesions and is vague about the lymphedema and whether it is connected to the CLL, or is a result of the Chemo.  Here are my questions:

Should I push for a more thorough look (or another scan) at the sclerotic lesions?
Is the lymphedema permanent (she was told that she will need to wear compression socks and get drainage massage for the rest of her life)?  Is it likely that the lymphedema is a result of the chemo or could there be other factors?
Are there other chemo options that are more effective at treating the cancer with less of a taxing effect on her lymphatic system?
My mom's original stage at diagnosis was IIIC - yet she is considered to be at Stage IV now - is it common for recurrance to be considered stage IV?

Any answers or guidance is greatly appreciated :)

Joanna in NH  

[jpwildflower]

Hi Jane,

Thank you so much for your kind words and perspective.  I will gently suggest that my mom consider either one of the other docs in the practice, or perhaps even just a consult with another oncologist in the area.  Like you, my mom is sooooo not into compression stoockings or wrapping her legs, but has scheduled lymphatic drainage massage 3x a week until further notice.  She says she is doing the exercises the physiologist directed her to do, but as she is growing increasingly frustrated with the lack of progress.  I'm so glad to hear that the Gemzar has helped your lymph nodes decrease in size - unfortunately, my mom has been on the Gemzar since October, and the lymphedema only started in January - suggesting that it is not as effective in reducing the lymph nodes for her (though she has seen greater tumor reduction, which is fantastic!!).

I will keep you posted!!  

Thanks again, and I hope you continue to improve on the Gemzar!!

Joanna

[jane65]

Hi Joanna,
Your Mom has really had a hard time with her cancer

first of all, I'm on Gemzar for recurrent OVCA which had metastasized to my lymph nodes by the time i was diagnosed in 2007.

I'm now dealing with lymphedema in the right leg where the cancerous lymph nodes are in my pelvis.
My oncologist said that Gemzar will shrink the lymph nodes, open the channels and allow the lymph fluid to drain, thus reducing the lymphedema in my leg.

Second, I'm not at all concerned that your Mom's oncologist is busy. His job is to give her the best care possible, that's what you "hired" him for.
Why don't you make an appointment for Mom to see one of the other oncologists in the practice, (I've done that to get another opinion), and if you're still not convinced they're doing all you feel they should, get all of Mom's records and test results and go elsewhere.
She shouldn't be suffering, or have lesions that are being ignored.

I hope this info helped, please let us know what you decide and how it goes.
She's so blessed to have a loving and caring daughter to care for her.
Jane
Jane

He was not in favor of leg wrapping at all, and felt the massage therapy would do little for me.
I did try it, the wrapping was torture, and I removed it the next morning, the massage was pleasant, but not wort the trip or the time. One therapist showed me some massages I could do at home, and I've done them daily when i put on the Eucerin lotion that my oncologist told me to use, to keep the leg moisturized.

He's right, with several Gemzar treatments behind me, my leg is shrinking and softer, and I've lost a few pounds of fluid.