Forum Replies Created
I like the chutes and ladders analogy – that’s exactly how I feel!!!
I do remember your story and am holding on to the hope that it works for me at least as long as it did for you or longer!
I look forward to hearing from you when you start the clinical trial next week and the weeks to come. It is something I will definitely keep in mind for the future but hope I won’t need!!!
Trying to explain this to family and friends is taxing as I’m trying to take it all in myself. I feel like my head is spinning and I’m having trouble concentrating. On a positive note though, I am leaving on 5/1 for a pilgrimage to Lourdes, France. I hear it is a very spiritual experience and I’m hoping the Blessed Mother (I’m catholic) will bring me peace (maybe even a cure) to deal with this disease. I come back on 5/7. That’s why I’m not starting SBRT until 5/8. The radiation oncologist fully supported my going to Lourdes and waiting until 5/8 to start SBRT.
Lainy – thank you for your kind words.
I’m sorry for all the trouble Lauren is experiencing but it sounds like she is on the upswing now. I hope walking on the treadmill will help her legs with the fluid retention. The two of you are going through so much. I really feel for you.
MaryApril 13, 2013 at 4:31 pm in reply to: New member,Any advice or positive support appreciated #70663
Thanks Alan. Caroline is one special little girl!!! her inspiring story brings tears of joy to my eyes. We can all take a lesson from her. I can imagine she will be your inspiration in the days to come.
I have a large family also and it means a lot to have them around and ready to encourage me on the down days. Sounds like your family will get you through this. Stay strong!
I will keep you in my thoughts and prayers.
Good luck on Wednesday – may all go well and you’ll be on to the trial!!! My prayers and thoughts are with you. As for God, we all forget sometimes – but thankfully He understands and alway stands by AND with us!!!
MaryApril 12, 2013 at 9:38 am in reply to: New member,Any advice or positive support appreciated #70660
I know how frustrating the ups and downs of the medical decisions can be. I’ve been through a few myself but as your doctor said – they want to be sure before putting you through surgery. That tells you how intently they are looking at your case and making sure the best decisions are being made. Kudos to your doctors!
Your post was very inspiring to me AND your granddaughter’s poem was beyond her years!!! What an insightful, beautiful girl at such a young age. That alone has to give you so much hope. I lost my son to Rhabdomyosarcoma back in 1989. It’s so good to see all the advances that have been made since then. I was so happy to hear that your granddaughter is a survivor!!!
Thanks again for your post. I’ll try and stay away from reading all the stuff on the internet and driving myself crazy!
I’m so sorry to hear about the difficulties Lauren is having. I know it must be frustrating having to go back to Michigan on Friday but I hope they can resolve the fluid retention and bring Lauren some relief from that. I feel for both of you and will keep you in my thoughts and prayers.
So happy to hear Lauren is out of the hospital and coming along well. I’m sure it must have felt good to her to be able to walk outside. Sounds like she’s a determined young lady – good for her!!!
I will continue to keep the both of you in thoughts and prayers. I hope you’re taking care of yourself so you can stay strong. I know this must be so tough for you and I’m sure Lauren is thankful for a Mom with such strength!
Thanks for the offer to call you but I think I’ll be okay and wait to see what happens on Monday. You have your hands full with what you’re getting ready for and I don’t want to take you away from that.
I hope all goes well with the testing on Tuesday and you move along quickly in the process to get started in the trial. This is very exciting and I look forward to hearing from you as you move along.
That was a very selfless thing you did giving your charm to that woman.
Thanks again Lainy and Kris. Even though I’ve had cancer since August 2011, I feel like I’m starting all over again with this new diagnosis last month.
Yes Lainy I agree with the terminology “professional patient” since this is like a job – the most important job of our lives maybe – besides raising our kids. I feel like my decisions can be the difference between dying and surviving. That’s what I think about when I wonder why not surgery for me. I read surgery is the best option. I’m hoping my mind will be put at ease on Monday when I meet with the interventional radiologist.
Kris, your situation sounds very similar to mine except that they were going to do a resection on you until the lymph nodes blew up. It’s good to hear some tiredness was all you experienced for the SBRT. I have spoke to Lisa a couple of times and she also seems positive about the SBRT. It’s good to hear from people who have gone through it. I believe you guys more than the doctors since you’ve actually experienced it. Was the actual treatment hard to get through? Lisa said they clamp your nose and put something in your mouth? I have my breathing exercises scheduled as part of my simulation on Monday. I guess they’ll go over all that with me then.
Thanks again for helping me move through all this. It really means a lot to have others to talk to who actually know what I’m going through.
Lainy & Kris –
Thanks for the words of encouragement. I guess I just keep hearing how surgery is the best option and I’m being told surgery isn’t an option for me. That’s where my confusion comes in and I have to clear it up at my appt on Monday. I thought surgery wasn’t an option on my first tumor (when I was diagnosed with Adenocarcinoma – unknown primary) that was wrapped around the celiac and hepatic arteries. But that tumor was killed off by radiation last year and is still inactive as of my last scan and MRI on 2/14/13.
Based on the MRI on 2/14 I was given my new diagnosis of Intrahepatic Cholangiocarcinoma – Stage III. I’m told the tumor is in my bile duct in my liver. I’ve never been jaundiced and I’m told my liver is functioning well. Although my Alkaline Phosphatase level has been as high as 360. As of last testing on 3/18 it was 274. Oncologist was not concerned about this since she felt it could be from chemo I was on at the time. I haven’t been I chemo since 1/29/13. Also, Bilirubin has always been within normal range.
Obviously, I don’t want to go through if I don’t have to but I want to get the best possible treatment now while I’m relatively healthy to give me a better chance of survival.
Sorry for rambling but Lainy did say it was ok and she is right – it is cathartic!!! (chuckle, chuckle!!!)
Kris – thanks so much for the vote of confidence for the SBRT. Would love to hear what your side effects were from it.
Thanks for listening guys!
Oh Lainy, you’re so sweet. I love that poem!!! It always makes me cry when I read it and the tears bring strength to keep on trying.
The SBRT is still on for next month. It’s just that getting so much information on this website and reading other stuff, I feel like my head is spinning and I’m wondering if I made the right decision. I think I have and this is just me being anxious but who really knows for sure about such tough decisions we’re forced to make with this disease.
I have a list of questions to ask the interventional radiologist on Monday when I have my simulation appt for SBRT. Maybe the answers will help me feel better about my decision.
I’m so glad you made your decision and seem to be at peace with it. The clinical trial sounds exciting. I’m excited to hear how you do as it moves along.
It’s so tough making these decisions – I know what you mean. I feel like I’m at a crossroads right now since I’ve been re-diagnosed and told its intrahepatic cholangiocarcinoma stage III. I feel like I’m starting all over again with doctors and treatments to choose. It can be so overwhelming so I can appreciate how at peace you must feel with making the decision. I wish you the best.
I have my port for 1 1/2 years now and I forget it’s even there when it’s not being accessed. I’ve had no issues with it.
If I remember correctly, when it was first put it I couldn’t take a shower for a day or two but then could as usual. They will tell you all this when it’s put in. It wasn’t painful. I’m an anxious person and I was very aware of it in the beginning – always looking at that part of my chest to see if it was okay. But now I don’t even think about it.
They flush it (saline to flush then heparin so it doesn’t clog up when not in use) after they use it. They if it’s not being used for awhile – which is what I’m going through right now – they flush it every 5 weeks. Again no big deal. They don’t like to take it out right away when you’re done with treatment in case you have to go back on. I haven’t had chemo since 1/29 – am going to have radiation in May with no plans for chemo at this time but I still have my port. Better to keep it in and not have to go through procedure again to have another one put in if I do need chemo again. As I said, I just make sure I have it flushed every 5 weeks.
Good luck with you Mom.
This is such great news!!! Have you made your final decision to go with it? Sounds like you have and it sounds really promising. Please keep us posted as you progress along – this is so exciting. Also, glad you feel good about your new oncologist. Keep on keeping on!!!
Spring is here and hope is in the air!!!
Thanks everyone for your kind words. This has been such a roller coaster for me since my re-diagnosis last month. I thought the doctor was was speaking another language when she said intrahepatic cholangiocarcinoma. I don’t know what I would have done if I didn’t find this website. I’m still trying to come to grips with all of this and try to stay positive and you have helped immensely.
I continue to recover from the surgery last week. I have my simulation appt next Monday, 4/8 and then I have some rest time before starting the SBRT in May. I was lucky to be able to talk to Lisa Craine from this website so I have some idea of what the SBRT entails. I’m still a little anxious but I guess I’ll get through it. Any advice is welcomed and appreciated.