Author Topic: Newly diagnosed? Join us in celebrating a great outcome from Proton Therapy!  (Read 1547 times)

KeepSmiling

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JOIN US IN CELEBRATING great news! My 60 year old husband had a conversation with the nurse and confirmed that the most recent MRI (taken Feb 23, 2018 for his five year anniversary of the Proton radiation treatment), actually showed shrinkage of the 1.5 cm tumor in the range of 1/3 to 1/2, and the doctor is very impressed. We are so happy! Congratulations to my husband, an expert at acoustics and vibration engineering and who studied the science of this treatment and understood the facts and pushed forward! In July- Aug of 2013 he endured the complex process of preparing for 28 treatments in uncomfortable customized devices that kept him immobile --but it was all worth it! He had no pain before the proton therapy , during , or afterward. He continued to work each day (full time), using a virtual office we created at the library for cancer patients. (Treatments each day took an hour and a half- most of which was preparation) ) He had no balance issues. He had no numbness or paralysis. We spent the money to relocate to that area for 6 weeks, but the investment was solid, given these great results. If anyone needs any info we have many detailed notes. Good luck to all of you! Specifics: Previous 1.5 cm tumor is now .5cm (AP) x .8 cm (TV) x .8 cm (CC). Dr. Loeffler Massachusetts General Hospital (The MGH Francis H. Burr Proton Therapy Center uses proton beam therapy to irradiate cancer and benign tumors. Proton beam therapy can be precisely aimed at a tumor with minimal dose to the surrounding healthy tissues.)
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

alabamajane

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CONGRATS to him and you ! That’s great news.

Thanks for posting about the treatment as there have been some on here recently asking about it.
Always great to provide first hand info. ,,, especially good outcome years out.

Continued great recovery,,,,

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

notaclone13

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Congratulations. Great news. So happy for both of you. Hopefully as proton therapy becomes available at more locations we will see more good outcomes like your husband’s. I sure hope so.

KeepSmiling

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There have been multiple warnings about range of uncertainty about Proton Therapy by a forum member who has had good results from CK or Cyber knife treatment. We discovered, in conversation with three doctors, all who have  with excellent credentials,  that  image-guidance alleviates the range of uncertainty concerns. The three doctors who refuted the claim that Proton
Therapy involves range of uncertainty issues are :
1. Dr. Lilia N. Loredo, M.D. to The James M. Slater Proton Treatment and Research Center at Loma Linda University Medical Center (LLUMC),

LLUMC Radiation Medicine, Room B 113
11234 Anderson Street
Loma Linda, CA 92354
Attn: Carol Maas 909 558 8210

2. Dr. Jay Loeffler
100 Blossom Street
COX-3
Boston, MA 02114

3. Dr. Allan F Thornton MD, 40 Enterprise Pkwy, Hampton, VA 23666
Phone: (877) 251-6838

Because I believe it is not permitted to post websites here. I urge the newly diagnosed to do an online search on the following words:
 
1. “…Reducing the uncertainties through image-guidance, adaptive radiotherapy, further study of biological properties of protons and the development of novel dose computation and optimization methods….”
 
Side comment from us: We believe that Dr. Loeffler’s staff seems to be an expert of reducing uncertainties through image-guidance.


2. Bull Cancer. 2018 Feb 5. pii: S0007-4551(18)30001-8. doi: 10.1016/j.bulcan.2017.12.004. [Epub ahead of print] [Why proton therapy? And how?] “…Proton therapy is a radiotherapy, based on the use of protons, charged subatomic particles that stop at a given depth depending on their initial energy (pristine Bragg peak), avoiding any output beam, unlike the photons used in most of the other modalities of radiotherapy…”
 
 
3. "Aug 22, 2012 Will protons gradually replace photons?"
 
4.    "Should Randomized Clinical Trials Be Required for Proton Radiotherapy? Quote… Of course, it is really all about money. Can anyone seriously believe that, if protons were cheaper that x-rays, there would be similar objections raised as to their immediate and widespread use? "
Side comment: 2008 discussion about ethics

 
4. Small Monte Carlos sample- about new Pencil BEAM-from 2010. “…We have thus confirmed that our current planning and delivery process for small proton fields is accurate enough to treat small lesions in the patient. Furthermore, we studied the impact of field size corrections and identified limitations of the pencil beam algorithm for predicting hot and cold spots and range degradation in the target due scattering in heterogeneities…” 
 

 
5.  2012 Department of Radiation Oncology, Massachusetts General Hospital and Harvard Medical School, Boston, MA 02114, USA. a.carabe@uphs.upenn.edu
On the subject of  Range Uncertainty: “…The results of our study allow a quantitative consideration of RBE-caused range uncertainties as a function of treatment site and dose in treatment planning.”
 
 
6.  "Department of Radiation Oncology, Francis H. Burr Proton Therapy Center Massachusetts General Hospital, Boston, Massachusetts 02114, USA. mengelsman@partners.org Quote: ‘…Our improved understanding of the passive scattering mode of the IBA universal nozzle, especially of the current modulation function, allowed us to re-commission our treatment control system for accurate delivery of SOBPs of any range and modulation, and to predict the output for each of these fields. We moved away from individual field calibrations to a state where continued quality assurance of SOBP field delivery is ensured by limited system-wide measurements that only require one hour per week. This manuscript reports on a protocol for generation of desired SOBPs and prediction of dose output.”


7. "Proton Therapy highly conformal treatment "
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

Abetpds

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Hi This is Regina  I'd been on this site about 2 years ago when diagnosed, with a 4cm tumor in my left ear --but with no symptoms other than hearing loss, I took the approach of W&W.  It worked until last week when my MRI showed growth of 2mm all around!!  So looking at surgery. Was told that Gamma would not work. Curios about Proton - but if the tumor swells, its out of the question.  Considering surgery with Friedman and Schwartz at San Diego.  Has anyone been there for surgery?  Were you happy with the place and facilities?  Two yrs ago, I was almost checked in at Keck hospital with Friedman  --loved the facility for loved ones . Why did Friedman move to San Diego?
I live in GA  -- Wondering if there are facilities near me with doctors who've done a volume of these surgeries.  Appreciate inputs .
Thanks.  Regina

alabamajane

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Hi Regina,
Impressive that you have been able to wait 2 years with a 4 CM tumor,,,, that’s a large one for sure.

I would say Vanderbilt in Nashville would be the closest to you for a facility that does volumes. They have a wonderful skull base tumor center and are actually a sponsor of ANA. Would be a good center for a second opinion I believe. Duke in NC also good I believe. UAB in Birmingham AL does many. Those are just some “ closer” ones that I know of.

But of course,, the “ THE CA Drs” are all some of the best!
Good luck to you ,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

notaclone13

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Regina posted that she will be having surgery on June 26th with Friedman in San Diego. 

 


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