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So, almost 3 wks into radiation and so far so good. It feels a little weird when I swallow, so I will talk to my doc about that tomorrow.
I went to the support group and it was a little sad and depressing. Lots of different young people with lots of different cancer. No other CC patients or even any type of GI cancer.
I’m still trying to get into Yoga. I’ve left 3 messages and no return call. One would think if you leave a message saying “I am a cancer patient and would like to register for the Yoga class for women healing from cancer” that it would warrant a call back, but apparently not.
Another thing I’m going to ask my radiation oncologist is about getting hyperbaric oxygen treatment to prevent radiation injury. Any thoughts or experience with this??
Have a good night, everyone!
SusieI kind of ran into a similar problem at Mayo. When I made my appt, I requested someone who was an expert with CC, but they kind of deferred me to their oncology department and I saw whoever was available. It all turned out fine, though. I saw Robert McWilliams at Mayo. I’m not sure if he is the most experienced cholangiocarcinoma doc at Mayo, but Mayo in general sees lots of these cancers and I found him to be very knowledgeable. Overall, I was very happy with him and the experience in general. (Keep in mind, I am a nurse and don’t give a good report on Dr unless I am actually impressed with them)
Also, I did ask Dr McWilliams about receiving care in another country. He did not recommend going out of the country for treatment. He said if I tried, I would probably find lots of countries willing to treat me, but that doesn’t mean it is safe/effective/proven treatment. It’s tough though, I don’t think I could ever imagine an American Dr telling you to go out of the country for treatment.
Let us know what you decide!
Best wishes!
SusiePam,
When is Lauren due for scans? I hope the 4th round goes smoothly. I always made some ginger tea and took it to chemo with me.
Take care!
SusieAndrew, I tried to get a phone consult at Mayo too, but was told the same thing. I had to go there for an appointment.
Take care!
SusieThat is funny, Andrew, my sister and I make inappropriate jokes about me dying all the time. And we do get quite a chuckle out of them. But, no, not everyone can handle that sense of humor.
It is not so much the dying part or recurrence that has me interested in a support group, but it’s more so to meet some people my age who can relate to what I’m going through.
Take care!
SusiePam, I just saw in this thread you sent me an email. I never got it. I’ve also emailed a few people on this site and have never gotten a response. Anyway, I just wanted to let you know I wasn’t ignoring you. Anyone else have problems getting email from this site? I have a feeling it is just me…my husband is an internet security specialist and probably has a bunch of unnecessary security on my email. That is the problem being married to a computer guy. I can’t even access my own email, lol.
Take care everyone!
SusiePam,
I’ve been reading your blog on Caring Bridge. Best of luck to your daughter. You all seem like a wonderful family and I’m sorry you have to go through this.
Best wishes.Susie
Rob,
I’m not sure that I’ve ever mentioned this on this borad, but I’m a nurse and I used to work on the liver tumor/transplant floor and then went to the transplant ICU. And, now ironically I have a liver tumor! Anyway, some of the patients would obviously get ascites if they have liver issues, but sometimes they would get edema in other parts of their body, commonly their legs but also their testicles. I don’t know if that is what is happening to you since it sounds like it’s only one side, but maybe a possibility?? Either way you should have someone look at it asap. If it is just swelling, then yes, washcloths under the testicles help. Best wishes!
SusieI’m very sorry for your loss. I don’t know what else to say. It’s just not right to have this disease at such a young age. My thoughts and prayers are with you and your family.
Susie
Hi Shari. Wishing you a great scan in November and an easy recovery from surgery. Best Wishes!
SusieOh, I forgot to mention, I learned at Mayo that there is a patient who has metastatic CC but has been living with it for 10 years!!!
Pam,
Hi. I am 31 years old and have intrahepatic cholangiocarcinoma. I had a liver resection in May of this year and now get chemo and will be starting radiation soon. I just wanted to say hello and let you know there are people on this site around your daughter’s age. I also presented with what I assumed was gallbladder pain and was blown off by the medical system. Dr’s just seemed to assume it was nothing because of my age. Anyway, I wish you both the best and if there is anything I can do to help please feel free to outreach. Although I live in Oregon now, I am originally from Pittsburgh, PA and received my surgery at UPMC. So, not too far from where you are located.
Take Care!
Susie
