New Tumor two months post surgery and chemo now Onco suggests Interventional Radiation. Need advice

Sara Zipora

Hi All,
To update. July 2010 had Dx, surgery, chemo treatment four carbo taxol, two Doxil carbo, till end of Jan 2011. Then Meggace till October when 8 cm tumor found and surgically excised, no more Meggace, then three Gemzar Carbo. Then CAT and PET where new 'hot' spots found.

Yesterday, Tuesday, went to Interventional Radiologist. Chemo has had it's day,  'good' lymph node on right side has grown and is now 'uptaker' I.e. 'hot' on PET scan. Also questionable post op site from Oct operation to remove 8 cm growth and do colon resection, seems to to show uptake too.
Anyway Radiologist suggested starting this coming Sunday with 'mapping' and in a week or two IRMT external radiation he is suggestimg five times a week for six weeks.  He'll do it in horseshoe mode to get lymph nodes on both sides, even though problem just on one but also hit are near post op cervical area.
The 'good news' Onc tells me is that metastases are localized to pelvic area.
Now, warriorettes, I am looking to your combined wisdom on how to mitigate if not avoid side effects.
I am VERY concerned how my head, psyche, will handle being immobile for hour of radiation then hour break and then another hour, that is if I understood him correctly.
Can I watch my iPad?
Can I listen to my tapes? Mp3 player?
Help!

Sara

Ro10

Sara so sorry to hear your news
You have been through so much already. I had IRMT external radiation. Each treatment only lasted 5 -10 minutes. The mapping is a much longer process, so that maybe the hour timeframe the doctor mentioned. I was recommended to have a full bladder before each treatment to push the colon away from the treated area. I had pelvic radiation. It must have worked as I did not have the bowel issues many others have referred to. The side effects I had were nausea the last weeks and fatigue. I had 28 external treatments, and a28 hour internal treatment. I also asked about a dilator after the treatment, but the radiation oncologist said I did not need one if I was sexually active. I have not had any problems in that area either.

There is no pain related to the treatments. It is embarrassing though at first, but I got used to it after awhile. The technicians I had were very professional. I had a beautiful picture on the ceiling to look at. Many days I prayed during the treatment. All of this is so scary when you don't know how you will react to the treatment.

Sara good luck with your treatments. I hope they are not as bad as you anticipate. In peace and caring.

daisy366

Ro10 said:

Sara so sorry to hear your news
You have been through so much already. I had IRMT external radiation. Each treatment only lasted 5 -10 minutes. The mapping is a much longer process, so that maybe the hour timeframe the doctor mentioned. I was recommended to have a full bladder before each treatment to push the colon away from the treated area. I had pelvic radiation. It must have worked as I did not have the bowel issues many others have referred to. The side effects I had were nausea the last weeks and fatigue. I had 28 external treatments, and a28 hour internal treatment. I also asked about a dilator after the treatment, but the radiation oncologist said I did not need one if I was sexually active. I have not had any problems in that area either.

There is no pain related to the treatments. It is embarrassing though at first, but I got used to it after awhile. The technicians I had were very professional. I had a beautiful picture on the ceiling to look at. Many days I prayed during the treatment. All of this is so scary when you don't know how you will react to the treatment.

Sara good luck with your treatments. I hope they are not as bad as you anticipate. In peace and caring.

Sara
I also will keep you in thoughts and prayers.

While I did not have abdominal radiation, I did have radiation to my neck area for 7 weeks. The set up took much longer than each treatment. It was scary at first but became routine. I also would do imagery during treatments and pray like Ro.

One thing I learned was the radiation continues to work on the body after treatment ends. I guess there is a cumulative effect. I planned many events to celebrate after my treatment was completed but unfortunately, the negative effects of treatment lasted about 2 weeks after treatment completed and I could not attend some pricey things (theater, shows, etc.) - just a caution for you.

All the best and wishing that you breeze through this treatment!!! Mary Ann

Sara Zipora

daisy366 said:

Sara
I also will keep you in thoughts and prayers.

While I did not have abdominal radiation, I did have radiation to my neck area for 7 weeks. The set up took much longer than each treatment. It was scary at first but became routine. I also would do imagery during treatments and pray like Ro.

One thing I learned was the radiation continues to work on the body after treatment ends. I guess there is a cumulative effect. I planned many events to celebrate after my treatment was completed but unfortunately, the negative effects of treatment lasted about 2 weeks after treatment completed and I could not attend some pricey things (theater, shows, etc.) - just a caution for you.

All the best and wishing that you breeze through this treatment!!! Mary Ann

Thank you
Thanks for encouraging and informative posts.
Now radiologist says along with five days a week radiological treatment, once a week cisplaton. Research show it works synergistically with radiation to increase uptake.
As if I am not anxious enough just figured out that I can't have CT or PET to monitornnonfurther recurrences till two months after radiation Tx.
If my bloods and Ca 125 dont tell a story, had great results even day before surgery to remove recurrence tumor, how to they monitor success of radiation?
Thanks for being there.
Sara

daisy366

Sara Zipora said:

Thank you
Thanks for encouraging and informative posts.
Now radiologist says along with five days a week radiological treatment, once a week cisplaton. Research show it works synergistically with radiation to increase uptake.
As if I am not anxious enough just figured out that I can't have CT or PET to monitornnonfurther recurrences till two months after radiation Tx.
If my bloods and Ca 125 dont tell a story, had great results even day before surgery to remove recurrence tumor, how to they monitor success of radiation?
Thanks for being there.
Sara

Hi Again, Sara
I also had chemo (carboplatin - closely related to cisplatin) weekly during my 7 wks of radiation. My docs also used the term synergistic. Terrific concept and glad you are getting this kind of careful planning.

Not sure if you are worrying before anything starts - or just checking things out. My docs did not monitor a thing for 7 weeks - no CA125 or anything. Then About 6 weeks after completion of treatment I had a PET/CT which was clean!!! yeah!!! So your 2 months is just 2 more weeks - they probably don't want any false positives and they also want to give your chemo and radiation all the time needed to do their work.

It's been 14 months since end of my recurrence tx. I have just gotten CA125 since (all within normal limits - yeah!!) and next week I will get my first PET/CT since Dec.2010. Got my fingers crossed for sure!!

Hang in there, Sara. Hugs, Mary Ann

Sara Zipora

daisy366 said:

Hi Again, Sara
I also had chemo (carboplatin - closely related to cisplatin) weekly during my 7 wks of radiation. My docs also used the term synergistic. Terrific concept and glad you are getting this kind of careful planning.

Not sure if you are worrying before anything starts - or just checking things out. My docs did not monitor a thing for 7 weeks - no CA125 or anything. Then About 6 weeks after completion of treatment I had a PET/CT which was clean!!! yeah!!! So your 2 months is just 2 more weeks - they probably don't want any false positives and they also want to give your chemo and radiation all the time needed to do their work.

It's been 14 months since end of my recurrence tx. I have just gotten CA125 since (all within normal limits - yeah!!) and next week I will get my first PET/CT since Dec.2010. Got my fingers crossed for sure!!

Hang in there, Sara. Hugs, Mary Ann

Calming down
Cant tell you how your post is easing my hyper ness. Thanks so much (((huge)))!!!!!!
I've just been thrown from optimism and hope, do excersize, changed diet a la Servan Schreiber, did chemo, then second surgery all to be double dashed so that my ' rmotional bank investment' of optimism and some agency, read control, over what's happening is in the proverbial toilet.
Thanks for being rationale having and holding out hope and common sense.

Sara

daisy366

Sara Zipora said:

Calming down
Cant tell you how your post is easing my hyper ness. Thanks so much (((huge)))!!!!!!
I've just been thrown from optimism and hope, do excersize, changed diet a la Servan Schreiber, did chemo, then second surgery all to be double dashed so that my ' rmotional bank investment' of optimism and some agency, read control, over what's happening is in the proverbial toilet.
Thanks for being rationale having and holding out hope and common sense.

Sara

I can so relate to your
I can so relate to your reaction. When I think back to finding out I had recurrence in May 2010, I was a lunatic!!!!!

Hindsight is always 20-20, isn't it? I am not delusional to think I am "cured" nor do I expect or plan on another recurrence. It's always a possibility which I dread but, like you, hope I don't have to experience it!!

I think my doc is awesome and so far he has done the very best for me. I have also changed my lifestyle like you (ala Servan Schreiber plus left full-time work to lower stress). I have confidence that I am in good medical hands and will deal with things as they arise. Hopefully my "lunatic" days have passed - lol.

Like me, you will get through this next chapter, then put it behind you, and march on.

Huge CYBERHUGS to you, Sara.

Your sis, Mary Ann