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Treatment with SBRT - Stereotactic Body Radiation Therapy started

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I had my first two SBRT completed.  I laid in my mold and got positioned " just right".  They used the marks on my body to line me up.  I had my arms raised above my head.  They put the brace on my stomach to keep the diaphragm from moving too much.  They put the rubber band in my feet again.  I had to lie still.  At least they never told me " breathe normal".

They did scans first and had the doctor check my positioning.  Then they gave me the radiation.  During the scans and during the radiation the machine moved around to the sides and over me multiple times.  It is called a  " trilogy" machine.  This is the same type of machine that did my pelvic radiation.  I don't know if other radiation machines move like this type does.   The whole thing lasted about 40 minutes.

i then saw the doctor.  I asked him about radiation burns, he said probably not.  He thought the only side effect I might have would be fatigue.  while I was waiting in the women's waiting room there was a lady who was getting radiation to her neck.  She said she could not taste anything.  I asked if my taste would be affected.  The doctor said no that the lymph node is down lower.  

I asked about follow up since we want to leave for Florida around Nov 1 st.  He said he would like CAT scans done every 3 months to see how this lymph node responds to the radiation, and see what any other lymph nodes do.  He is fine with me having the CAT scans done in Florida and sending the report to him.  He said Moffitt Cancer Center ( where I go) does the SBRT so they will be able to follow  the progress.  At my consultation he said it may be three to six months before there is any noticeable change.

I asked him if he thought my marker would go up due to the radiation.  He said he did not know.   He said they have never treated anyone with endometrial cancer by treating this area.   He had told me it was rare for the Cancer to go this area.  He said in the long run the marker should go down.   So it will be interesting to see what happens with the marker....and the CAT scan.

Today I had the second treatment.  Not as many scans today.  The procedure was about 30 minutes.  No discomfort with any of it.   I feel no different than I did before the treatments.  I will see the doctor on Wednesdays.   Whenever I ask the technicians a question......you will have to ask the doctor.

So I have two down and eight to go.  I'll keep you updated.  Thanks  again for your thoughts and prayers.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

This sounds so great!  I am so glad there was so little drama and trauma like some get with chemo!  Don't know if I could stay in that position with my arms raised.  I'm all for no pain!  Good luck with the other ones!  Debrajo

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Sounds like it's running pretty smoothly, Ro.  Just eight to go and then those little rays can really get to work zapping the pesky node!  I know what you mean about asking the technician's anything - it the same over here in the UK - they always refer you to the Dr!

Hope the rest of the sessions go smoothly for you

Kindest wishes
Helen

Abbycat2's picture
Abbycat2
Posts: 636
Joined: Feb 2014

Ro, this is good news.  it amazes me that you basically never have symptoms! As the weather is now turning cold in the Chicago area, you are probably looking forward to your return to Florida. It is still raining almost every day here but the mornings and evenings are beginning to cool off a little.  I have relatives in Chicago and close friends in Michigan City, IN, where I lived and worked for many years.  The town is only an hour southeast of Chicago. I receive frequent updates on the weather there. Hope your Tx continues to go well for you. My biggest complaint about cancer is that Tx is so time consuming. It's a full-time job!

Warm Wishes,

Cathy

Kaleena's picture
Kaleena
Posts: 1883
Joined: Nov 2009

Oh Ro!

So happy that it is going smoothly for you and that the second treatment didn't have any discomfort with it and the procedure is only 30 minutes.    I have been praying for you and will continue to do so.

My best to you!

Kathy

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Great report! So glad to hear things are proceeding smoothly. It sounds as if you're in very good hands.

Sending more prayers for the best for you!

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2459
Joined: Mar 2013

He said, "they have never treated anyone with endometrial cancer" - WOW!!!  Truly "cutting" edge for you and them!

Continued prayers for you Ro.  I love your spirit and you inspire me!

Sisters three
Posts: 165
Joined: Nov 2012

No discomfort treatment, that is wonderful! I sure hope this brings your CA125 down.

Enjoy Florida!

 

ConnieSW's picture
ConnieSW
Posts: 1351
Joined: Jun 2012

Thanks for taking us with you.

nempark
Posts: 683
Joined: Apr 2010

Ro, you are a fighter!!!Hang in there my love.  I think of all of the ladies on this board. you all are wonderfully made and we are all so strong.  Good health to all of you.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Today I had treatment number 5.....,,5 more to go.  I feel no different than before the treatments started.   The procedures are about 30 minutes.  They do scans each day before I get the radiation.  It is the same procedure each day.  I lay in my mold,I put my arms over my head.  They put the rubber band over my feet.  Yesterday I saw the rubber band, and it is actually just abig rubber band.  I thought it might be something more elaborate  but it's not.  Then they up the brace over my stomach to keep the diaphragm from moving too much.  they put on my choice of music from Pandora, and I lay still until the treatment is done.

I saw the doctor today.  He asked if I had any trouble swallowing, and I said no.  He said that was good.  I asked him if the same area could be treated if needed later.  He said he has never had to treat the same area again.

i asked how much radiation I was getting compared to a CT of the chest,abd, and pelvis.   I was not prepared for his answer.  I knew it was intense radiation.  He said it was about 1000 times the radiation of a CAT scan.   there was a physicist with the doctor he gave a number of 0.01 something for a CAT scan and the doctor said I was getting 6.5 something else, or about 1000 times as much radiation.  WOW.  

He said it was like 10 lazers from different directions all pointed at the same  point and where the brightest light is is where the radiation goes.  The rest of the area is dark.  Very targeted.

He told me I could get lung scarring from this treatment.  He never told me that before.  He said it would affect my trachea but he did not say how.  So we  will see  what happens. 

I will be glad when the treatments are over though.  We are staying with my sister and brother in law.  They are about 45 minutes from the hospital.  We are very welcome here, but it's not like home.  We will go home again Friday and come back Monday.

Hope you are all doing well.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Hang on in there, Ro.  It will soon be over.  It's very strange, isn't it, to be receiving a treatment which you can't feel?  I hope that the collateral damage to lungs and/or trachea doesn't occur.  It's frightening when they tell you these things, but we need to hold the thought that they have to tell us, even if the chances of it happening are pretty remote.  I am sure you will be so relieved when the treatment is over and you can get back to the comforts of home.

Wishing you well for the remainder of the treatment.
Kindest wishes
Helen xx

Kaleena's picture
Kaleena
Posts: 1883
Joined: Nov 2009

Ro,

I am so glad you are halfway through and that you don't feel anything different from before you started.   I will continue to pray for you and that you stay well.   Thanks for checking in!

My best to you.

 

Kathy

imackie48
Posts: 96
Joined: Nov 2011

Ro, are your treatments going to to done before nov, when you leave for Florida. i wish you well and hope that the radiation does it's job, and you have the least amount of side effects if any. Eat well and get plenty of rest.

im still not over this gastritis, but I realize it takes a long time to heal. 

my prayers will be with you.

Irene

 

molimoli
Posts: 514
Joined: Aug 2014

Ro Your description helps to curb my run-away imagination. we are rowing for you .Thanks and stay brave.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2459
Joined: Mar 2013

You are such an inspiration, Ro! 

The treatment is fascinating and terrifying to me.  Thank you for sharing this with us. 

nempark
Posts: 683
Joined: Apr 2010

I think of you all the time Ro.  You are almost there.  After all this you will have a full recovery. Continue being positive.  Keep us posted.

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

Ro,

Thanks for letting us in on your treatments, it helps to pave the way for someone else if they may need it. You are a brave, strong, woman. I always watch for you because we have identical diagnosis. Keep up the Fight!!!

Tami 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

They all went well. No pain, no side effects.  It will be three months before we know whether it took care of the lymph node.  I thought the node would shrink or get smaller, but it will always be there.  It just won't grow anymore.  I thought the concept of "cyber knife" would be like removing the node.

i do have a sinus infection and cough,  so laying flat onthe table was a problem onMonday.  I had to cough several times,but not when the radiation treatment was being delivered.  My cough is better, but I still have it.  I started antibiotics on Monday.  I am tired, but coughing has kept me up at night.  And the cough syrup with codeine makes me tired, too.

So they destroyed my mold after the last treatment.  Now I will have a CAT scan every three months until results are seen.  I will not follow up with this radiation onocologist, but just send him CAT scan results.  He said several times that I am "different" and CA-125 has always been a true marker for me, so that is what to follow.

Thanks  for all the thoughts and comments as we wait for results.  Hope you are all doing well.

ConnieSW's picture
ConnieSW
Posts: 1351
Joined: Jun 2012

Thank you so much.  The knowledge you and Helen have shared is invaluable.  I assumed the node would go away.  Interesting.

My fingers are crossed that this all works just the way it's supposed to.  Here's hoping the cough clears up soon but I've heard what's going around now is pretty persistent.  Nagging coughs are so annoying.  I know sugar is a no, no but a mixture of honey and cider vinegar, esp at night, works much better for me than codeine.

bluesmama
Posts: 123
Joined: Aug 2014

You're such a trooper! Glad to hear your treatments are over. Good luck and I hope you hear good news soon.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Well done, Ro!  You're through it - no more molds or lying still without coughing (I have a cough at the moment, so understand that one!).  It's such a long time to wait to know the results but hopefully you will continue to feel well and can divert yourself with other activities (Halloween, Thanksgiving and Christmas all coming up).

Sending good vibes
Helen xx

Abbycat2's picture
Abbycat2
Posts: 636
Joined: Feb 2014

Ro,

You are finished with your treatment!    That is reason enough to celebrate!   Thank you for keeping us informed of your treatment, Ro.   Since this is not typical treatment for uterine cancer, did you have trouble getting your insurance company to pay for it? 

Warm Regard,

Cathy        

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I told him about my sinus infection and cough.  I asked for some thing for my cough at nighttime.  He said he thought my cough was from the radiation therapy.  He mentioned "radiation flare" that would make the inside like a sunburn.  Since the lymph node was right next to the trachea, he feels the cough is a side effect of the radiation.  He also asked if my prescription for codeine cough syrup was "old"?  i told him it was from 11/13.  He said codeine loses its potency.  So he gave me a new prescription.  If this does not work, he will try something else.

The antibiotic has taken care of the infection.  My drainage is clear now.  I am fatigued, but I attribute that to not getting a good night's sleep due to coughing.  The doctor said I can expect the irritation from the " radiation flare" for about 2 weeks after the last treatment.  That means another week of this coughing.  I don't understand if the cough is from the radiation why is it so much worse in the evening and night.  I have slept in my recliner most nights.

I had lab work drawn today after I saw the doctor.  I will be curious to see to see what the CA-125 did.  They only run those on Thursdays, so I won't know until then.

i will follow up with this doctor in April and have a CAT scan before I see him.  I have an appointment in Florida for November.  I will have the  first 3 months CAT scan in Florida, too.  So the waiting game continues.

Double Whammy's picture
Double Whammy
Posts: 2821
Joined: Jun 2010

I'm so glad this part is behind you, Ro and hope that it did its job.  Radiation is mysterious and scarey stuff, isn't it?  I, too, thought the node would just shrivel up and go away.  Afterall, they do call this cyber "knife", don't they?  When will you get results of CA 125 and did they tell you anything about how this might effect it at this time?  I don't know if I hope the cough is from the radiation or if you've got a sinus thing going on, but it is coincidental with the radiation, isn't it?  I do hope it resolves quickly and you can get on with heading for the sunshine and feeling good.

Suzanne

Kaleena's picture
Kaleena
Posts: 1883
Joined: Nov 2009

As Suzanne says, I am glad this part of it is behind you now.   I hope your cough issues dissipates quickly and you can get some good sleep in.  Not sleeping well at night will definitely cause daytime fatigue.   Just want you to know I am continuing to keep you in my prayers.  Thanks for keeping us updated.

Kathy

imackie48
Posts: 96
Joined: Nov 2011

Ro, once you get to Florida and can sit in the warm sunshine you will get better, plus the codeine cough syrup works wonders. I'm glad your finished with that radiiation and didn't hve too many side effects.

my best to you,

love, Irene

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

i got my CA-125 results today.  My last one was 1582, this weeks was 1179.  Yippee !  I thought probably the marker would go up from irritation from the radiation.  Neither the radiation onocologist or medical onocologist knew what the marker would do.  I am so pleased it went down.  That must mean the radiation is doing its job on the lymph node. 

The radiation onocologist did not think my cough was from the treatments.  However he did order some new cough medicine for me.  He ordered Tessolon perles.  It is supposed to numb the cough reflex.  I took one this afternoon and I have had less coughing.  I hope it works tonight,too.  

I did get more sleep last night.  It sure makes a difference when you get agood night's sleep.  Hope to get some things accomplished that I couldnot do while I was in St. Louis or resting in my recliner.  Hope you all have a good weekend.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Good news about the markers, Ro.  If they are starting to tumble now, just imagine what they could be a few more weeks down the line.  Really pleased that you got a better night's sleep, too.  Until we've had a spell of restless or sleepless nights, I don't think we realise how important sleep is and how broad the fallout from lack of it can be!

Have a good weekend
Kindest wishes
Helen xx

Kaleena's picture
Kaleena
Posts: 1883
Joined: Nov 2009

Good news, Ro.  I am so glad to hear about the marker coming down.   Also, I am glad that it appears that your new cough medicine is starting to work.   I am glad to hear you got more sleep last night.   Not sleeping well can really have an effect on you during the day.

Starting the weekend here and we get an extra day on Monday!   

My best to you.

Kathy

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

That is sooo stinking great Ro!  WOW! over 400  points!  Deep breath, deep breath. I am so happy for you and happier for all of our futures!  Rest up, feel better, it's 89 degrees here in Texas on the Gulf Coast....Florida is calling your name!  Best, Dera 

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I hope your cough is easing, Ro.  It's difficult to know if it's an infection or the radiotherapy effects, isn't it?  Perhaps it is a combination.  But hopefully the new codeine linctus will help.  The tiredness could also be a combination effect, but I hope you can get back to your bed, rather than the recliner, soon, so you can get a better night's sleep. 

I am off for my last treatment, and a chat with the specialist, today.  I am assuming that I will then start the waiting game too, with an MRI scan probably in 3 months. CA125 isn't a marker for me, so scans are the only way to see what is happening.

Wishing you well and hoping that the Florida sunshine brings restorative effects to you.

Kindest wishes
Helen x

 

Tresia23's picture
Tresia23
Posts: 76
Joined: Dec 2010

Hi Ro,

I have not been on discussion board for quite a while. Did not realise what was happening for you until I read posts this morning. I admire your steadiness through all your ups and downs. I was wondering if your cough may be due to dryness. Sometimes people with rheumatic disease develop persistent cough for this reason. Dry atmosphere can also be irritating to airways. A bowl of water in heated or air conditioned rooms sometimes helps. Hope the change of climate in Florida will suit you better. Loving thoughts,

Georgia

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

My cough is getting better each day.  I am taking less cough medicine and cough pills.  The cough still wakes me once or twice a night, but it stops quicker than it did last week.  I Still feeling tired.  It's two weeks since I finished the treatments, so the radiation flare should be better.  The radiation onocologist's nurse called yesterday to see how I was doing.  I told her my cough was better, and the pills help me get more sleep at night.

i tried to honey and lemon drink.  Even went out and bought some whiskey to add to it.  It worked a couple of nights!  I tried the bowls of water, but it did not seem to make a difference.  I think time has helped it.

Cathy you asked earlier if there was any problem with medicare paying for the treatment.  The doctor's office took care of arranging the payment.  I got an electronic statement from my secondary insurance about the payments.  It was about $4000 each treatment plus the fee for the doctor each day.  Then there was the mold fee, the CT scan prior and the initial consultation.  So far it has been about $80,000.  Of course medicare has not paid that.  That is just what the hospital billed.

The drop in my marker was probably greater than 400 points.  it was July 16 when I had it drawn.  My marker always increases, so I am sure it raised more before I started the radiation.  So to me that is very positive.  

Hope you all are doing well.  In peace and caring.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am so happy.  My last CA-125 was 1179, today it was 508.  I did not expect the marker to drop as  quickly as it has. since I had  the SBRT.   I would guess that the treatment is destroying the Cancer in that lymph node.  I still have a cough, but it is not as bad as it was.  I have no other symptoms.  I will have a repeat CAT scan in January to see what the results show on that lymph node, and make sure the other lymph nodes remain small. I will have another CA-125.

Hope you are all doing well.  Wishing you all a Happy Thanksgiving.  I know I am very thankful for every day.  In peace and caring.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2459
Joined: Mar 2013

Such wonderful news and I am so happy for you Ro! 

Abbycat2's picture
Abbycat2
Posts: 636
Joined: Feb 2014

 

 

Ro, I  am so glad to hear how well you have done with treatment!! Wow!  I hope that you, and all the wonderful women here, have a blessed Thanksgiving! We have so much to be thankful for! I am grateful to my new friends on this board: you have helped me cope with my own personal cancer journey. Thank you, thank you, THANK YOU!!

It happened to Me's picture
It happened to Me
Posts: 203
Joined: Apr 2014

I'm so happy to hear that.  We'll continue to pray that the cancer cells die.  You have a great Thanksgiving as well.   We all can be thankful to be alive and that we have each other.

Happy Thanksgiving.  I, too, am very thankful for all you ladies.  I'm also thankful that my 3rd three month check-up went well.  I'm feeling good and feeling stronger. 

Jeanette

ConnieSW's picture
ConnieSW
Posts: 1351
Joined: Jun 2012

made my day.  I am over the moon for you.  I'm hoping next we'll hear the same from Helen.

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Ro,

Quite frankly, you are AWESOME!  That is wonderful news!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Susan

txtrisha55's picture
txtrisha55
Posts: 676
Joined: Apr 2011

So happy to here your news.  May you have a great Thanksgiving. Continued good news. Trish

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

what great news! I am so happy for you. Have a wonderful Thanksgiving.  Sandy

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

That's fantastic news! So glad you're responding so well to your treatment........have a great Thanksgiving!

Sisters three
Posts: 165
Joined: Nov 2012

You have made my day! Great news, Happy Thanksgiving Ro, and everyone else too!

Lisa

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