Re: New to this Nasty Disease

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

Re: New to this Nasty Disease

Tivers, 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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to this Nasty Disease

Theresa....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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New to this Nasty Disease

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,
Mary

Re: New to this Nasty Disease

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

Re: New to this Nasty Disease

Theresa...be safe, we are awaiting your report
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New to this Nasty Disease

Canceled for today. Rescheduled for Monday 24th and Thursday 27th of next week. 

Stay tuned smile

T

Re: New to this Nasty Disease

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 smile 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.

Re: New to this Nasty Disease

Dear 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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to this Nasty Disease

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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER