New to this Nasty Disease
Discussion Board › Forums › Introductions! › New to this Nasty Disease
- This topic has 34 replies, 10 voices, and was last updated 8 years, 10 months ago by marions.
January 28, 2014 at 3:36 am #78144
Theresa….such great news. It would help to know beforehand what type of radiation will be used for your Mom. I suspect it to be IMRT – intensity-modulated radiation therapy. It is a type of 3-dimensional radiation therapy that uses computer-generated images to show the size and shape of the tumor. Thin beams of radiation of different intensities are aimed at the tumor from many angles. This type of radiation therapy reduces the damage to healthy tissue near the tumor.
Your Mom might know the exact type of radiation or her physician’s office may know.
MarionJanuary 28, 2014 at 3:19 am #78143
Mom is on her 8th treatment this week and handling Chemo well. She has labs, radiation therapy consultation and evaluation appointments set up in Rochester with her specialist on February 17. I’m sure there are questions I need to ask but I have no idea what I should ask. I know treatments will be daily for 5 weeks and will take approximately 10 minutes once set up. I should probably ask what technique they will use like “cyberknife”. Could you all help me in what I need to ask? Her overall health and outlook on all of this is positive, plus she has immense faith. She continues to gain weight and is adding more daily tasks weekly. She is also a childs advocate in the county, which has kept her mind sharp and her drive strong. She has a few cases coming up that will finalized with forever homes – adoptions – which gives her the utmost satisfaction in difficult cases, this is where she gets her will and drive. So any information or questions I need to address would be greatly appreciated. I keep all of you in my prayers, you have given me such strength.
TheresaJanuary 23, 2014 at 8:23 pm #78142lainySpectator
Theresa, YIPPEE on the fantastic news. The only thing that would please us more is more good news the next round! This is just wonderful.January 23, 2014 at 7:17 pm #78141
Theresa….fantastic news. Can’t wait to hear the updates.
MarionJanuary 23, 2014 at 7:00 pm #78140lisasSpectator
Fabulous blood work is great news. Shrinkage is great news. Sounds like she is just behind me time wise on looking at localized radiation to kill of the tumor. We’ll have to compare notes.
LisaJanuary 23, 2014 at 6:53 pm #78139darlaSpectator
Theresa, That all does sound encouraging. Hoping it will continue.
Love & Hugs,
DarlaJanuary 23, 2014 at 6:31 pm #78138
We have encouraging news, the tumor is shrinking with no new lesions noted. Her blood work came back “fabulous” as her Doctor put it. The Doctor will now be consulting with her GI/Cholangiocarcinoma specialist on whether or not she will be a candidate for localized radiation. I asked what the new measurement was on the tumor and I was told that it’s not as visible or dense as it was before and therefore could not get a good measurement on it, but that it was considerably smaller. She is having some neuropathy of the toes and finger tips, so they are lowering her Cysplatin a bit. I’m still on the cautious side with the decisions made, but I feel I need to be an advocate for her, to an extent, in the end it is her decision as far as how much she wants to go thru. I feel she’ll keep fighting-with prayer and treatments- until she can’t. Thank you all again for your kind words and prayers. I’ll be keeping you informed through out this journey.
TheresaJanuary 23, 2014 at 1:17 am #78137
Absolutely, dear Theresa. A tidal wave of good wishes is heading your way.
MarionJanuary 23, 2014 at 12:28 am #78136darlaSpectator
Will do Theresa. Good thoughts and prayers for Alice coming your way. Will be waiting to hear about the results and hoping for the best.
Love & Hugs,
DarlaJanuary 23, 2014 at 12:16 am #78135
Well, tomorrow we get the results of her Scan done this morning. Please keep “Alice” in your prayers for healing. I will check in tomorrow afternoon with news.December 29, 2013 at 11:18 pm #78134kris00jSpectator
Theresa, welcome to our family. It’s a tough road, but this is the best group of people! When it comes to information, answers, options, I think this is the best place to hear about most everything, from medical to patients point of views. We can also get silly… It helps with the stress sometimes.
It’s great that you have so much info at your fingertips. Sloan Kettering has all blood work online, but as of April hadn’t gotten other records online yet. It was supposed to happen.
As far as attention to cc: I hate to say it, but thankfully there’s been a few famous people diagnosed lately… Maybe that will help.December 29, 2013 at 12:18 am #78133
Theresa….I have been told that some people have a susceptibility for cancer but as of now we don’t have the answer as to why this occurs. Cholangiocarcioma is rare and no early detection methods are in place; that is why you see the majority of cases diagnosed with late stage disease. Rare cancers don’t receive the attention such as the more common cancers with the hope that research for those cancers will lead to answers for us as well. Well, it is my opinion that we have not benefitted very much in re: to our disease. Anyway, dear Theresa, I do believe, as the others have mentioned, to search out physicians “very” familiar with this cancer is one of the most important steps to take.
Hugs to you
MarionDecember 28, 2013 at 8:45 pm #78132lainySpectator
Theresa, your Mom sounds like a true fighter. Thanks for the information about the APP. You are right this is not an adventure for the weak or faint of heart! We compare CC to a roller coaster ride, so many ups and downs. I have never heard that CC stems from breast, lung or colon. I thought it was mostly from the liver or bile ducts which include the gall bladder and duodenum. I know it can met to lung, colon, bones etc. Yes, some things happen for a reason but like an ONC once said its a toss of the dice with CC. We do not yet know what is causing it or why. So, we take each day at a time and get through it the best we can. You never know how strong you are until “strong” is the only choice you have!December 28, 2013 at 8:15 pm #78131
My mom is my best friend. We have been fortunate to be able to travel together and spend quality time over the years, so this is not going to be an easy adventure for me.
I don’t know how many other Clinics/Hospitals offer this, but Mayo Clinic has an App that I’ve downloaded to my phone. I am able to view my moms records, in ALL areas, right in the palm of my hand. It has been extremely helpful for me to be able to get results for within 20 minutes of a blood draw. Obviously I am on her records as an information release contact. It might be helpful for other people to ask their facilities if they offer such a service.
Her is her history: 1973 perforated malignant colon polyp, removed 12 inches of colon, mesenteric tissue and affected lymph nodes, no follow up treatment.
1979 removed a contained ovarian cyst, malignant cells observed, no follow up treatment.
She has had routine colonoscopies every 3-5 years since 1973. Only once has she had a clean-no polyps- on her colonoscopy.
When we met with Dr. Law to get her results from the first ERCP, he told us that their findings were Cholangiocarcinoma. This type of cancer is a metastatic type cancer usually stemming from breast, lung(?) and colon. Another Dr. We met with said that since it has been this long and the colon cancer back in “73” was a T1 lesion, he didn’t feel that this is where it came from. Our family history has very little cancer within it.
In looking at her pathology reports from past years I came across a report for her 2/2008 colonoscopy. In the report it states that there was a polyp removed and pathology finding were positive for Tubular Adenoma. I asked her ONC if this was substantial and I was told no, that they are two different types of adenoma cells. I can understand this to a point, I do have some training in cell morphology. I come to the conclusion that “Things happen for a reason”, I have not been able to figure this reasoning out yet, probably never will. All of this, sounds like in everyone’s situation, happens so fast and there are no real big flags that anyone can put up, except for the loss of weight, nausea and decrease in appetite prior to turning jaundice and itching. Mom turned yellow and icteric with in a 24 hour time period.
All I can say is that we pray a lot, and put our trust in God and her team of Specialists from here on out. She is a fighter and continues to do so. I gave her the website address yesterday, she’s not sure yet if she wants to read what other people have to say – quite yet. I told her that the stories i have read have given me HOPE and encouragement about her condition. She said yesterday as many of you have that “no one has a specific expiration date”. If that doesn’t tell you she’s ready to fight, nothing will. Thank you all for your kind words and support.
When we sat down with hDecember 28, 2013 at 5:52 pm #78130willowSpectator
Yes, this is a good site to help you through. Sounds like you’ve got your Mom at a great place for treatment. Marion’s advice to take this “one day at a time” is good because it’s too hard to predict and can be a roller coaster. These seem like canned sayings but I really understand now why people with serious conditions use them! Best to your dear mother.
- The forum ‘Introductions!’ is closed to new topics and replies.