karend

Thanks! In my opinion, Nausea/vomiting is one of the absolute worst symptoms to be experienced. It is especially severe in so many patients with CC. I was excited to be at this session and to hear the physicians ideas for management of this side effect.

Percy,
Thank you for the new oral taxane update! It will be exciting to hear what results have been found through the trials.

I thought it was curious that this trial included Taxol. I see it used mainly for breast and GU cancers.
Taxol can be very hard on people as I’m sure you know. I don’t know that I would have chosen this trial over another based on the reported findings.

Looking forward to meeting you at ASCO!

Karen

Roni,

I am so sorry for my late reply. I just noticed your posting today.
I will preface my reply with this: I am speaking from a nursing point of view only. I do not pretend to understand the responsibility that weighs on a physician in practice. That being said, the needs of the patient are what matter the most.

I completely agree with you on all of your points. The physicians that I have encountered who cared for my mother-in-law, did not know how to treat this cancer. Most importantly, the complicated management of symptoms, i.e. nausea/vomiting, etc. I cannot say that I had much experience with it either until our family was faced with it.

I feel that it is absolutely necessary to educate the medical community about this cancer. We can’t all be experts on everything, but being that the cases are so rare, if a patient is newly diagnosed the first thing an Oncologist should do is assist the patient/family to consult a major CC treatment center. Of course this is just my opinion…..but I saw first hand how the lack of experience with this cancer can severely impact the quality of life of a patient with CC.
I am learning that as a advocate for our foundation, educating the physician about our website/support is key! If the physicians know about us, then they can in turn pass this information on to their patients.

In regards to hospice, I have found that the speed in which a hospice consult is placed really depends on where you are receiving care. I have worked on both East/West coasts, and I have seen very different takes on hospice care. Some places are more progressive than others.

Hospice is a good thing! Palliative care/Hospice physicians, nurses, social workers, nursing assistants, etc. are skilled at managing pain and other symptoms. They are able to provide a more holistic care plan; one that takes into account the daily life of the person they are treating. My Mother-in-law too was afraid to accept hospice. She thought people would feel that she was giving up hope. The thing about hospice though is that it is not about giving up; it is about hope, joy, LIVING, and loving. Patients and families are given an educated and knowledgeable support system that can help to make life more manageable. Also, there are studies that have proven that patients trend toward living LONGER while on hospice because they are holistically cared for.

http://www.nhpco.org/i4a/pages/index.cfm?pageid=5746
http://www.nejm.org/doi/full/10.1056/NEJMoa1000678

Roni, thank you so much for the wonderful links! I learned a lot while looking through them. I most definitely will be in touch.

-Karen

All information is this post is purely informational and not intended to be taken as medical advice.

You’re welcome Gavin!!