Stereotactic Radiotheraphy

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
Who has had this done? Anyone here have it done for lymph node mets only? Can you tell me what it was like for you?

I have good news. My CEA stalled out at 3.6. It stopped rising! But still I am challenging the long-term plan for my treatment. I pushed my oncologist for SRT or cryoablation. He was against cryoablation saying it is surgery and he does not want surgery for me now. (As I understand it, this is hardly surgery - almost more like a CT guided biopsy, but I guess his thought is more risk than SRT, and I'd have to stop the Avastin and possibly all chemo first.) With SRT I can continue chemo right up until then. I had been searching for where I could go to get this done in network, and got more good news. I had no idea (because I've never needed radiation), but my oncologist's group has a stand-alone radiation center, and they have the equipment for SRT, and two doctors that he says are great with the procedure! It is a farther drive than my usual hospitals or clinics, but is still in our metro area!

So my new plan is to continue chemo for another 3 tx. Then it will be time for my next scan. I can't see the radiologists without a current scan and my last one is too old now. If my CEA continues an upward trend, or goes over 5, we will push up the scan. If it holds steady as it did now, we'll wait until mid-October to scan. If I can get SRT, I will take a chemo break after that. We'll monitor my CEA closely (it has been a very good indicator for me the last 2 years). When I've looked clear on scans and had CEA under 2 in the past, I've only made it a couple of months without progression. That might still be the case. I'm not burying my head in the sand - I know the chances are that I will have more lymph nodes pop up with cancer in time. But, if I can just get 2-6 months off chemo to get stronger again, that would be huge for me - it would make a difference in overall tolerance and longevity of treatments. If I continue on chemo every two weeks indefinitely, I'm just going to wear out and be done too soon.

I know there is no guarantee yet that the radiologists will say yes to my case. My oncologist is concerned because one met is in my chest, and the others in the abdomin. He'd like them all to be in the same area. But he isn't a radiologist. I'll wait to see what they have to say. I have a good feeling about this. Finally I am counting down with chemo again! The first 12tx I got through because I could count down. But for the last year I've only been able to count up. That is so much harder mentally.

Once again I've learned to keep advocating for myself, and pushing things a bit. My case is unusual, so there isn't a lot of data for treatments (there are a couple of us here like this - with only lymph node involvement, and no organ involvement, and nothing other than chemo suggested for us). If we aren't happy with the plan, we need to push to try other things, and make new data for those that come after us too. I found one study of 7 patients using SRT for lymph node mets, that seems pretty promising. Yes, the numbers are small, but the outcome was impressive compared to anything else. In a case like mine, stats show that if chemo fails, the survival rate is 30% at one year, 8% at two years, and less than 1% at 4 years. WIth the 7 treated with SRT, the one year survival rate was 100%, and the 3 year was 74%. That is by far the best numbers I have seen. They were followed 15-70 months, and at the end of that time there was one NED, 2 alive with disease, 3 dead from disease, and one died from another cause. All had initial colon resections and adjuvent 5-FU based chemotherapy, and then had progression to paraarotic lymph nodes. That is where my first progression was. I did respond to chemo at first and those nodes are not active right now. They all had one conglomerate node, or 2-3 separate nodes in the same area. I now have 4 or 5 nodes active, with one in the chest and the others in the abdomin. So, I don't fall into this exactly, but close enough for it to give me some hope. I'm not going to just sit around waiting for the day when chemo fails, or when it becomes so toxic to me that I am done and die. I'm going to be proactive when a treatment looks promising, and pursue those possibilities!

Comments

  • lesvanb
    lesvanb Member Posts: 905
    This is great news Kathryn
    especially to get a break in the chemo which is so hard on you. I had stereotactic radiation done to the 4 lung mets (one in each lobe)in January 2011. I had an early and excellent response. I have dealt with pneumonitis since April but finally the cough is gone. I have a followup CT in 3 weeks. My medical oncologist who has wanted me on chemo for over a year now did agree in June that I had "bought some time." So here's to the same outcome for you.

    all the best, Leslie

    PS blood counts did well during and after tx, no drop in strength etc; other than the pneumonitis all went well during and after tx.
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    Your Courage and Information Inspire Others
    Kathryn,
    You are one courageous woman. I am amazed at your strength and appreciate how you research and how you take charge of your health. I read your comments whenever you are online.

    My thoughts and prayers are with you.
    NB
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    lesvanb said:

    This is great news Kathryn
    especially to get a break in the chemo which is so hard on you. I had stereotactic radiation done to the 4 lung mets (one in each lobe)in January 2011. I had an early and excellent response. I have dealt with pneumonitis since April but finally the cough is gone. I have a followup CT in 3 weeks. My medical oncologist who has wanted me on chemo for over a year now did agree in June that I had "bought some time." So here's to the same outcome for you.

    all the best, Leslie

    PS blood counts did well during and after tx, no drop in strength etc; other than the pneumonitis all went well during and after tx.

    Questions
    Thanks for the feedback Leslie. I'm glad your cough is finally gone, and your results sound promising too! I've never had any sort of radiation so I'd love to hear how the procedure goes and any other thoughts you have on it. Thanks
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member

    Your Courage and Information Inspire Others
    Kathryn,
    You are one courageous woman. I am amazed at your strength and appreciate how you research and how you take charge of your health. I read your comments whenever you are online.

    My thoughts and prayers are with you.
    NB

    Thank you
    Thanks! I just do what I have to do to stick around to finish raising my kids, like anyone else would do. I have discovered that no matter how good our medical professionals are, each has a certain comfort zone and my medical oncologist does what he knows - chemo first - other things are considered when chemo doesn't work. Like most people he bases decisions on past experiences with patients and regular standard of care. But I'm always ruining the bell curve so the "rules" don't apply to me! ;) So I research and push just a little if I think we can mix things up. It was a huge improvement for me to drop 5-FU and just go with Irinotecan, which I do not think would have been offered if I hadn't brought it up. Standard of care is FOLFIRI... I challenge my oncologist to think outside the box when the patient doesn't fall within the normal parameters.

    I've kind of always been this way, from delaying immunizations for my babies (I stayed home with them and breastfed), going to an osteopath that used chiropractic and treated whole body with drugs as a last resort, to having the first OB/GYN delivered baby in the midwife section of the hospital delivered in a double bed, and not a delivery bed! The midwives all thanked me for breaking that barrier. There is no one right, perfect way to treat everyone - we are all individual and the medical community needs to recognize that and treat us individually when the usual methods aren't best for us.
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    Thank you
    Thanks! I just do what I have to do to stick around to finish raising my kids, like anyone else would do. I have discovered that no matter how good our medical professionals are, each has a certain comfort zone and my medical oncologist does what he knows - chemo first - other things are considered when chemo doesn't work. Like most people he bases decisions on past experiences with patients and regular standard of care. But I'm always ruining the bell curve so the "rules" don't apply to me! ;) So I research and push just a little if I think we can mix things up. It was a huge improvement for me to drop 5-FU and just go with Irinotecan, which I do not think would have been offered if I hadn't brought it up. Standard of care is FOLFIRI... I challenge my oncologist to think outside the box when the patient doesn't fall within the normal parameters.

    I've kind of always been this way, from delaying immunizations for my babies (I stayed home with them and breastfed), going to an osteopath that used chiropractic and treated whole body with drugs as a last resort, to having the first OB/GYN delivered baby in the midwife section of the hospital delivered in a double bed, and not a delivery bed! The midwives all thanked me for breaking that barrier. There is no one right, perfect way to treat everyone - we are all individual and the medical community needs to recognize that and treat us individually when the usual methods aren't best for us.

    For those of you that were wondering about what this actually
    entailed...and yes, so was I , I did some copying and now pasting for all to read...Thank you Kathryn for another route to ask about...Im not one to sit to long either. Im looking at photodynamic therapy and SRT as well. To heck with standard Folfiri/Avastin. Im giving it its due but with the SRT and photodynamic therapy as soon as I think possible...I will be in touch with those people soon to make them aware of my thoughts and their opinions of them....
    Here is what I copied about SRT...........

    ....Stereotactic Radiation Therapy

    A specialized type of external beam radiation therapy called stereotactic radiation uses focused radiation beams targeting a well-defined tumor, relying on detailed imaging, computerized three-dimensional treatment planning and precise treatment set-up to deliver the radiation dose with extreme accuracy (i.e., stereotactically).
    There are two types of stereotactic radiation:

    * Stereotactic radiosurgery (SRS) refers to a singe or several stereotactic radiation treatments of the brain or spine. SRS is delivered by a team involving a radiation oncologist and a neurosurgeon.
    * Stereotactic body radiation therapy (SBRT) refers to one or several stereotactic radiation treatments with the body, excluding the brain or spine.

    SRS/SBRT is best for very small tumors. Doctors use specialized scans to pinpoint exactly where within the body the tumor target is located. A customized holder may be used to keep the body perfectly still during treatment, or the treatment machine may have the ability to adjust for patient motion such as during breathing. These techniques allow doctors to give a high dose of radiation to the tumor in a short amount of time. SRS/SBRT is a type of external beam radiation therapy that can be completed in one to five days rather than over several weeks.

    The advantage of SRS/SBRT is it delivers the right amount of radiation to the cancer in a shorter amount of time than traditional treatments. Plus the treatment is delivered with extreme accuracy, minimizing the effect on nearby organs. A disadvantage to SRS/SBRT is that this technique is suitable only for small, well-defined tumors that can be seen on imaging such as CT or MR scans, thus the approach is not suitable for all situations. Also, the amount of radiation that may be safely delivered may be limited if the cancer is located close to a sensitive normal structure, such as the spinal cord or bowel. You may want to read ASTRO's Emerging Technology Committee's report on SBRT for prostate cancer.
    Other Names for Stereotactic Radiation

    There is sometimes confusion about the branding of equipment separate from the terminology of SRS or SBRT. Stereotactic radiation may be delivered by a number of different devices; brand name stereotactic treatment machines you may hear mentioned include: Axesse, CyberKnife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy or Trilogy. It is important not to confuse these brand names with the actual type of stereotactic radiation under consideration.

    end.........

    keep the determination to win, and win you will.............hugs....buzz
  • lesvanb
    lesvanb Member Posts: 905
    Buzzard said:

    For those of you that were wondering about what this actually
    entailed...and yes, so was I , I did some copying and now pasting for all to read...Thank you Kathryn for another route to ask about...Im not one to sit to long either. Im looking at photodynamic therapy and SRT as well. To heck with standard Folfiri/Avastin. Im giving it its due but with the SRT and photodynamic therapy as soon as I think possible...I will be in touch with those people soon to make them aware of my thoughts and their opinions of them....
    Here is what I copied about SRT...........

    ....Stereotactic Radiation Therapy

    A specialized type of external beam radiation therapy called stereotactic radiation uses focused radiation beams targeting a well-defined tumor, relying on detailed imaging, computerized three-dimensional treatment planning and precise treatment set-up to deliver the radiation dose with extreme accuracy (i.e., stereotactically).
    There are two types of stereotactic radiation:

    * Stereotactic radiosurgery (SRS) refers to a singe or several stereotactic radiation treatments of the brain or spine. SRS is delivered by a team involving a radiation oncologist and a neurosurgeon.
    * Stereotactic body radiation therapy (SBRT) refers to one or several stereotactic radiation treatments with the body, excluding the brain or spine.

    SRS/SBRT is best for very small tumors. Doctors use specialized scans to pinpoint exactly where within the body the tumor target is located. A customized holder may be used to keep the body perfectly still during treatment, or the treatment machine may have the ability to adjust for patient motion such as during breathing. These techniques allow doctors to give a high dose of radiation to the tumor in a short amount of time. SRS/SBRT is a type of external beam radiation therapy that can be completed in one to five days rather than over several weeks.

    The advantage of SRS/SBRT is it delivers the right amount of radiation to the cancer in a shorter amount of time than traditional treatments. Plus the treatment is delivered with extreme accuracy, minimizing the effect on nearby organs. A disadvantage to SRS/SBRT is that this technique is suitable only for small, well-defined tumors that can be seen on imaging such as CT or MR scans, thus the approach is not suitable for all situations. Also, the amount of radiation that may be safely delivered may be limited if the cancer is located close to a sensitive normal structure, such as the spinal cord or bowel. You may want to read ASTRO's Emerging Technology Committee's report on SBRT for prostate cancer.
    Other Names for Stereotactic Radiation

    There is sometimes confusion about the branding of equipment separate from the terminology of SRS or SBRT. Stereotactic radiation may be delivered by a number of different devices; brand name stereotactic treatment machines you may hear mentioned include: Axesse, CyberKnife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy or Trilogy. It is important not to confuse these brand names with the actual type of stereotactic radiation under consideration.

    end.........

    keep the determination to win, and win you will.............hugs....buzz

    Thanks Buzz
    I had Gamma knife which does not require an implant (name? fiducial??) The weirdest thing was being sucked down under plastic which held me in place (I could've broken out of it but...well..) and then having the machine move position around me, then fire (those red lights that go on etc). The dosage time was longer than it was for the radiation I had for my rectal tumor.

    best, Leslie
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    Thank you
    Thanks! I just do what I have to do to stick around to finish raising my kids, like anyone else would do. I have discovered that no matter how good our medical professionals are, each has a certain comfort zone and my medical oncologist does what he knows - chemo first - other things are considered when chemo doesn't work. Like most people he bases decisions on past experiences with patients and regular standard of care. But I'm always ruining the bell curve so the "rules" don't apply to me! ;) So I research and push just a little if I think we can mix things up. It was a huge improvement for me to drop 5-FU and just go with Irinotecan, which I do not think would have been offered if I hadn't brought it up. Standard of care is FOLFIRI... I challenge my oncologist to think outside the box when the patient doesn't fall within the normal parameters.

    I've kind of always been this way, from delaying immunizations for my babies (I stayed home with them and breastfed), going to an osteopath that used chiropractic and treated whole body with drugs as a last resort, to having the first OB/GYN delivered baby in the midwife section of the hospital delivered in a double bed, and not a delivery bed! The midwives all thanked me for breaking that barrier. There is no one right, perfect way to treat everyone - we are all individual and the medical community needs to recognize that and treat us individually when the usual methods aren't best for us.

    Kathryn keep us posted, I'm
    Kathryn keep us posted, I'm a "lymph node" person too. No involvement in liver or lungs. But, I have a small spot on my spleen (onc. says we don't know if that's cancer or not, his words). I just makes sense to me to pluck/fry those little suckers out if you can.
  • pokismom
    pokismom Member Posts: 153
    I had this done.....
    Hi Kathryn,
    I had SBRT done this past January at the university of Washington. I had yo go there in December to have a cast mold made of my body, so that you are in the same position at every session. I have a nodule in my lung that was very close to an artery and RFA would not be effective so they suggested stereotactic radiation. It was a very costly procedure and at first my insurance denied it but after the doctors talked to them it was approved. I had five sessions, spread out over three weeks with almost no side effects. I had to breathe thru my lungs and not move my tummy, so they have this weight thing on your belly so you don't breathe with your abdomen. If you want to go into details pm me, glad you are looking into other things as I did, I can truly say I don't regret it, even though I'm on chemo now because of my liver. Take care and wishing you the best!
    Donna
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    pokismom said:

    I had this done.....
    Hi Kathryn,
    I had SBRT done this past January at the university of Washington. I had yo go there in December to have a cast mold made of my body, so that you are in the same position at every session. I have a nodule in my lung that was very close to an artery and RFA would not be effective so they suggested stereotactic radiation. It was a very costly procedure and at first my insurance denied it but after the doctors talked to them it was approved. I had five sessions, spread out over three weeks with almost no side effects. I had to breathe thru my lungs and not move my tummy, so they have this weight thing on your belly so you don't breathe with your abdomen. If you want to go into details pm me, glad you are looking into other things as I did, I can truly say I don't regret it, even though I'm on chemo now because of my liver. Take care and wishing you the best!
    Donna

    Thanks Donna
    Is that lung tumor gone now? I hope so!

    Sorry you still have to be on chemo for the liver. I hope that you become resectable or a candidate for some procedure for the liver at some point soon.
  • laurettas
    laurettas Member Posts: 372
    Another thought
    One thing I have wondered about as well with lymph involvement is why they can't infuse chemo directly into the lymph system. My husband, when he had Hodgkin's many years ago, had a procedure called a lymphangiogram where they pushed dye through lymph veins throughout the whole lymph system so they could get a clear view of the entire lymph system. I don't understand why they can't take chemo and infuse it into a lymph vein with a pump. Does anyone know why this isn't done?
  • pokismom
    pokismom Member Posts: 153

    Thanks Donna
    Is that lung tumor gone now? I hope so!

    Sorry you still have to be on chemo for the liver. I hope that you become resectable or a candidate for some procedure for the liver at some point soon.

    Thanks
    Hi Kathryn,
    Thanks for your kind thoughts! I appreciate it. I think that the tumor is still there but I've been having a good response to the chemo so hopefully it'll take care of it. I'm not really sure what kind of effect the radiation had because I started chemo in April and sometimes I'm not sure that the radiologists here know what the RFA and radiation looks like on my ct scan. Im going to ask my oncologist in Seattle when I go to see him next week!
    Have a great week!!
    Donna