New to this Nasty Disease
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Tlivers……your Mom conquered the tiredness rather swiftly. Great to hear. Good vibes are heading your way. Stable is fantastic. May the good news continue.
Hugs,
MarionDear TIvers, excellent news! One of our favorite words as you know is shrinkage! Hoping the next report is just as good. You are so right in that being a family team makes all the difference in the world and brings one to a higher level than they ever thought they could be. Will be awaiting more good news.
Sorry for the long lapse. Mom made it thru making her molds for the SBRT Tx’s, she said, that was the worse because of having to have her arms above her head for long periods of time. In March she had 5 treatments over 5 days ranging anywhere from 30 – 60 minutes depending on her breathing routine. She did start to feel fatigued after the 3rd treatment and the fatigue continued for about 3 weeks but it did decrease over those 3 weeks. She is now feeling and looking very good. She had her 3 month blood work and scans, she requested a full body scan – good for her, just last week, we received really good news. She has some elevated liver enzymes, doctor was not surprised to see that because of the radiation, expects to see it decrease at her next check up, total bilirubin is at 0.5
scans showed a possible reduction in the size of her bile duct mass, at least it didn’t grow, hopefully will see more reduction in 3 months, no new lesions were observed. She’s been in good spirits about all of this and I think our faith has grown going thru all of this with lots of support and prayer. God bless us all as we travel this unpredictable journey together.Thank you
I feel my mom has been fortunate in a couple of ways thru all this. She had to have 2 ERCP’s done, first plastic stent plugged so now she has 2 metal stents in place and they have done very well for her. I will let her know about the fatigue build up, they did give us a list of most common side effects to watch for. Her appointment is tomorrow morning and she is so looking forward to it, unfortunately we are having a terrible blizzard storm as I type, and I may not be able to get out to take her because I live in the country – I guess I should have stayed at her place in town tonight. I will keep you all updated as we plug along.Hugs to all and In Faith,
Theresa
I had SBRT May 2013 with minimal results. It kept me stable so I guess that’s good. Unfortunately, no shrinkage. Side effects weren’t that bad. Actually, the most uncomfortable thing was being on the table. It was very painful when they tighten the belt they put on you to keep you from moving so they can hit the direct spot with the radiation. I went on to chemo after that and am currently on chemo. I’ve had some issues with bilirubin going very high so they put a metal stent in the bile duct in my liver which is still working well. I also had issues with fluid build up (ascites) in my abdomen so recently had a drain put in my stomach where I can drain myself. It’s working well so far.
Hope this helps. Wish you the best.
Love, Peace & Hugs,
MaryTheresa….from what I have learned, fatigue may be the most common side effect of this type of radiation. In general it builds up toward the end of the treatment and your Mom may need to rest as needed. Otherwise we have not seen much of anything negative to report. I wish the best of luck for your Mom.
Hugs,
MarionTivers, congratulations on all the good news. Billie of .5 is nothing to sneeze at!
Hoping everything goes well on Friday. I assume they do not have a start date yet? You are on the right track! Sorry I can’t give you anything on SBRT, you will now become the Pro!Mom’s evaluation, labs and consult went well. The type of radiation treatment is SBRT. She goes in this Friday for simulation imaging, MRI and CT Scan to get everything “lined up” for the treatments. 5 treatments over a 2 week period depending on hers and their schedule. With the neuropathy in her hands, response to chemo as far as shrinkage, they felt radiation would be the way to go. She feels good about the path they are taking. We did learn that she only has one kidney today, a complete surprise. Need to really watch her kidney function tests as well.
Is there anyone that could give me some feedback on their experience with this SBRT?
LisaS, how are you doing? I believe you were to start radiation or already started. Hope it’s going well for you.
Percy, I hope you are gaining your strength back.
Keeping all of you in my prayers,
Theresa
Bilirubin is down to 0.5 today, still coming down
I dropped 20#’s early on. My low was 113. At my normal 130-135, I had muscles. I definitely had cyclist legs (and was darn proud of them). I am working on getting them back.
God, I hope I don’t smell bad. I know the dang external drain bags stink to high heaven, but I’ve been able to cap off my drains and not wear the bags other than rare circumstances.
I’m glad your mom is gaining. I’ve put on nearly 10 of the 20 I lost, but it’s taken several months and I had to resort to eating stuff I normally wouldn’t touch (another Girl Scout cookie anyone). I was just reading the threads on nutrition and I was having trouble with weight (or desire) eating as cleanly as I used to do regularly. In fact, my doctors (and even the dietitician at Baylor) have told me to eat anything that tastes good at this point – that I have a “get out of jail” card, so to speak. My radiation oncologist said …and I quote “I don’t care if you come in here everyday with a Big Mac and a beer” he just wants me to add at least 5 lbs before I start radiation and hopes I’ll be mad at him because “my pants don’t fit.”
I’m trying to come up with some run/walk/ride idea as well. Why should the big cancers get all the attention? And have all the fun?
Ps, yes, if your mom needs drains, ask away.
56 is young as I am 49 and my husband is 56 as well. Moms appetite was not good either, she said things didn’t taste good and that her coffee tasted bitter. I noticed that she had a different scent, body wise and halitosis. Her Bilirubin was at a 21 high. Since her 2nd ERCP and two metal stints placed, her Bilirubin is down to 0.6 as of last Thursday. Her color was a golden yellow, her house is neutral-brown colors so her color was not noticed until she stepped outside. Sounds like you have a very knowledgeable team working for you. They did mention drain placements to mom if the stints didn’t work, now I have a resource to go to if need be. I think moms overall exercise, healthy diet and healthy living has helped in this journey so far. She dropped 15# which put her at 108#. Not an ounce of fat on her in the beginning and now nothing to spare, but like I mentioned she has been gaining. I’ve been thinking of doing a run of some sort myself as my husband and i are very active, work wise and fitness wise.
Hi, Theresa,
I turned 56 in August, although I like that you think I write “younger.”. I thought of 56 as young. And, I thought of myself as super fit. In fact, the week before I was diagnosed, I did a 100k charity bike ride in hilly Nashville. In hindsight, I complained a lot about how awful the food was all weekend at the hotel and I’m guessing now it really wasn’t that bad and that it was the beginning of my tumor making itself known. The jaundice came a few days later and progressed fast.
In reading back through your earlier posts, How high was your mom’s bilirubin? Has it come down? Mine was high to start and I looked like a waxy banana (according to one doctor), but it has dropped constantly since I got my PTC drains and so far, knock on wood, is well within normal range (0.3).
Thank you both for your input, gives me a place to start. They’ve only been saying “localized radiation”, not what type yet, and Dr. Pitot and the Radiation Specialist will decide which will be most beneficial, I’m sure. We probably won’t find out until 2/17/14 while we are there. I will definitely look at this website so that I can educate myself before this meeting. Lisa, I talk to mom about you a lot just because you both are so close in the time frame. I had told her, because she asked how old you were, that I thought you somewhere between 45 – 55 just by in how you write. I was not to far off, was I? 56 I believe is what I saw. I will also look on this website in the treatment area to see if there is any other info that may be beneficial. The way this IMRT sounds, it’s sounds almost foolproof, nothing is though. As we are at her meetings on the 17th, I will be thinking of you as you proceed.
Take care & I’ll be checking in again,
TheresaIf it is IMRT, as Marions noted, that is different than cyberknife. If you go to http://www.radiologyinfo.org/mobile/en/info.cfm?pg=imrt, there is a good explanation, including a video. As my doctor explained, he is recommending IMRT for me (mine actually starts 2/17) because it is not as precise as cyberknife. These cc tumors have ‘tentacles’ for lack if a better word, so they want to make sure they don’t miss parts of it. Or so I’m told.
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