Topic: Internal radiation therapy

Since I last wrote I have had 2 Sirtex internal radiation therapies.  I had reaction to the contrast but that was treated during procedure & 2nd treatment took med prior to prevent reaction.  I had the last treatment 4 weeks ago.  I have been having nausea & some pain in area of liver.  I also am having bad taste in my mouth.  I will have an MRI next week to determine how effective the radiation was & what will be done next.  Our HMO medicare supplement has been good for us so far but is frustrating to have to wait for all the authorizations.  So far everything has been authorized for me to have my treatments etc. at UCIrvine Chao Comprehensive Cancer Center.  I take one day at a time & have the best supportive friends & prayed for daily.  God is the Great Physician & He knows best.  I have peace that I am doing what I need to do.

Re: Internal radiation therapy

Dear Pattimelt, have you talked to your ONC about your pain and the taste in your mouth? Thankfully, you are not having a problem with your Insurance as that can sometimes be a big battle. Guess you will know more after your MRI next week and we will wait to hear your update. If you have not talked to your ONC about the pain, I think that would be  a good idea. Hoping for a good report on the MRI.

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: Internal radiation therapy

I did ask about pain & taste in my mouth.  He said the pain might be a good thing as the radiation may cause the tumor to swell before it shrinks!  I haven't had pain there for the past few days.  He said the taste in my mouth is from the tumor.  My appt. was at 3:00pm & we didn't see him until 4:30 so didn't have time to go further with the questions.  I was somewhat frustrated.  I need to be sure we have more time when we see him after my MRI results come in.

Re: Internal radiation therapy

Hi Patti,

Thanks for letting us know about your treatment and I hope that it is working very well. And please let us know how the MRI goes and everything will be crossed for your results! Taking one day at a time sounds like a plan to me, and that is what I used to do with my dad.

Here are a few links about mouth pain that may be of use to you -

http://www.mayoclinic.com/health/mouth-sores/CA00054

http://www.cancerresearchuk.org/cancer- … ncer-drugs

http://www.macmillan.org.uk/Cancerinfor … erapy.aspx

http://www.macmillan.org.uk/Cancerinfor … erapy.aspx

Hope some of these are useful to you and like Lainy mentions, have you spoken with your Onc about this?

Best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Internal radiation therapy

Pattimelt, mmm mmm mmm, I do love P.melts! I am sure you have heard that one before. Sorry I have never heard of a tumor swelling before it shrinks from Radiation nor causing a funny taste. Please, someone correct me as I would like to  know. I am also not so secure with an ONC not giving more time with a CC patient. Patti I would suggest having all your questions written down before you go. I am on 2 hard Meds for Colitis and even write down my side effects! When is your next appointment? Perhaps a call to change the time to a not as busy as a time? Best wishes!

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: Internal radiation therapy

Pattymelt:  I have learned that radiation therapy can cause change of taste that typically goes away once treatment is complete. Plenty of liquids, tart foods, such as oranges or lemons might help.   And, good, old, lemon drops seem to do wonders for some.  Others may share some of their helpful tips with us too.
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: Internal radiation therapy

I had the radiation beads and could not eat anything at all for a week and little for the next week. Don't remember the taste, though. I have heard of a metallic taste from a lot of folks with chemo. But yes, definitely liver pain after radiation. I assumed it was cells dying as I also had liver pain during chemo when the tumors were shrinking.

Re: Internal radiation therapy

Thanks for the info!  I have been feeling really good the past 2 days.  Waiting until I have my MRI before I will know what is next for treatment.  So I will enjoy the feeling good days.

Re: Internal radiation therapy

Excellent, Pattimelt. So glad you are feeling better, onward and upward. When is your MRI?

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: Internal radiation therapy

Next Tuesday, April 30th.  Then May 6th with my doctor to get results.  Lots of waiting because of all the authorizations I have to get.

Re: Internal radiation therapy

I have had some friends suggest that I use doTERRA essential Frankincense oil.  Has anyone tried this 'alternative' medicine?  One of them was determined I do it & gave me a bottle.  I said I couldn't afford it (it is $90) so she gave it to me.  My massage therapist also suggested I rub it on the area of my tumor!  I am such a sceptic & my doctor doesn't see any benefit of it.

Re: Internal radiation therapy

Dear Pattimelt, I always go with my gut feeling and it never steers me wrong. If your Onc says no, I would't touch it, as it "rubs" me the wrong way. I know friends and family mean well but why can't they take no for an answer. When my Teddy got sick, in the beginning, I let people know in a nice way that this is a strange and rare Cancer and I would appreciate more if they were just there for us and please NEVER tell me what to do or suggest because unless you have dealt with CC you cannot begin to know. It worked! I just didn't have brain or energy enough to spare to argue with all the well meant suggestions.   
P.S. I just researched this Company and they had a 2* rating out of 5. Buyer beware.

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: Internal radiation therapy

Hi Patti,

I've never heard of that either and did a quick google for it. Seems to be lot of sites making outlandish claims about it to say the least and one even claimed that it was more valuable than gold! If it is more valuable than gold, why does it only sell at $90!! I'm with Lainy and your docs, keep your $90 to yourself!!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Internal radiation therapy

I am very frustrated.  The results of my MRI were not great but doctor said he needed my bloodwork redone to see what the CA 19 will tell & then present my info to the tumor board to decide if I should have a 3rd sirtex radiation or move on the Chemo.  I am feeing really down tonight.

Re: Internal radiation therapy

Pattimelt, please don't be discouraged as this is the strangest ever disease. For one I am glad that the whole Board is in on this decision making. You can find that many members got what they felt was discouraging news only to have it turn around for the better. We call this our roller coaster ride. What did he say that made you feel it was not great. In the mean timetry to do something a little fun and different during this little break. Wishing for the best for you and I know you will let us know right away. Good Luck.

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: Internal radiation therapy

Thanks Lainy.  The MRI results were not conclusive.  It did not show that my tumor had changed but the doctor said the radiation may have caused some swelling before it 'shrinks'.  This is a strange disease.  We saw a guy at lunch yesterday with a t-shirt that said, "F--- CANCER"!  I never use that word but I wanted to wear that t-shirt yesterday!

Re: Internal radiation therapy

Patty.....agree with the T-shirt description and your comment in regards to the strangeness of this disease.  Patty, from what we have seen, radiated tissue undergoes immediate and ongoing changes.   Hang in there and try to relax (if possible.)  The blood test will aid the physicians in providing a clearer picture.
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: Internal radiation therapy

Does anyone know or has anyone been able to be present when the 'tumor board' meets to discuss your case?  My doctor is going to the tumor board on Monday & then we will see him afterwards.

Re: Internal radiation therapy

Patty....Only specialist with expertise in the specific cancer take part in the meeting.  The patient's primary cancer physician will present the case and participate in developing a strategy based on the information given.
It would be way to difficult for a lay person to understand this conversation.  The fact that a tumor board is taking your case under consideration always is a good sign, dear Patty.
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: Internal radiation therapy

Patty,
My case has been presented at the tumor board meetings several times but I have never been present. I had steriotactic radiation three times. The first time I had it, my first scan results were not great...no change.....my radiologist said the radiation continues to work so we ran another scan in about 6 weeks and the results were excellent. Maybe the radiation isn't done destroying your tumor yet.
Lisa

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: Internal radiation therapy

Thank you lisacraine!  Very encouraging to hear good results.  I have been feeling really good this week.  My anxiety causes some physical stuff but no nausea & the bad taste I was getting is gone.  When I feel this good it is hard to believe I am in Stage 3 CC!

Re: Internal radiation therapy

I had sirispheres on Feb 20th and they would not scan anything for a minimum of 8 weeks - - 3 months is preferred. why? because the radiation causes the liver to become inflamed and annoyed and the mri's look awful and are hard to read until that time. Then, you cannot tell if things are alive or dead even then. you have to look closely at ct/contrast and at pet scans but even more importantly at the NEXT scan 3 months out later. do not be distressed! it takes time and then full effects are 6 months out, even. Best of luck to you. Holly

Re: Internal radiation therapy

Thanks Holly!  I am going to pursue 2nd opinion.  My PCP is helping me with that.  he is just my family doctor but so supportive.  The doctors at UCI seem to have been in disagreement about when to do my post SIRT radiation scans.  The radiology oncologist said to wait 6 - 8 weeks & then when I saw the surgeon he wanted to do it sooner.  So I had the MRI 5 weeks after the radiation.  I am a little concerned about this tumor board meeting that they will not be together on what to do next.  Thus my need to get 2nd opinion.  I have only had the radiation treatments.  No chemo yet. 
You all are so knowledgeable!  I am learning alot being on this discussion board.  It is helping me so much. 
Pattimelt!