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This is one of my go-to websites when having to administer chemotherapy. Thanks for the posting! I hope you are well!
I am so sorry to hear the difficulty that your husband is going through with the chemo treatments. Cisplatin can be so very hard on people.
I have not spoken with you before, but I happened to notice your post today. I felt so worried for you all, and wanted to reach out to you. As someone who gives chemo to patients, hearing that your husband is so greatly affected makes me think that there needs to be some discussion re: current chemotherapy treatment. Perhaps there could be a reduction in the dose of the medications, or different medications used. You are right to be concerned, as you are his wife, you know him very well-and you know when something is not right. Go with your gut. Have a frank discussion with the oncologist and let them know how quickly things have changed since starting the standard chemo.
I do not know if my post will help out or not, it is not meant to worry you, only to tell you that you might be onto something with the chemo causing issues. Also, are you near Mayo? I just happen to be in Minnesota right now and if there is anything I can do for you, let me know!
-KarenJuly 10, 2012 at 8:39 pm in reply to: Glucocorticoid reduced Cancer-Related Fatigue(abstract#9002) #61884
Thank YOU Lainy!!!!
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.July 5, 2012 at 12:02 pm in reply to: Glucocorticoid reduced Cancer-Related Fatigue(abstract#9002) #61882
I’m sure you have seen this, but we will often given Ritalin to patients suffering from cancer related fatigue. I have seen it work quite well!April 19, 2012 at 10:52 pm in reply to: Erlotinib(tarceva) and Docetaxel Phase II trial info #60075
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!
KarenApril 18, 2012 at 7:02 pm in reply to: Erlotinib(tarceva) and Docetaxel Phase II trial info #60073
It looks like this trial has been terminated for now.
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.
Roni, thank you so much for the wonderful links! I learned a lot while looking through them. I most definitely will be in touch.
All information is this post is purely informational and not intended to be taken as medical advice.
It is so heart-warming to hear your good news!!!
Also to see that you are from Richmond. We used to live there and actually still have a house in Ginter Park. The weather must be so nice right now.
Did your husband seek treatment at VCU? I haven’t heard whether or not they were doing liver resections/transplants there for Cholangiocarcinoma.
KarenApril 10, 2012 at 2:58 pm in reply to: March 2012 Society of Surgical Oncology Poster Presentations #59767
You’re welcome Gavin!!
Thank you all for the warm welcome!