HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 11-24-2009, 05:58 PM   #1
CLTann
Senior Member
 
Join Date: Oct 2005
Posts: 476
why is there no test for cumulative radiation

Hi friends,

Now we have heard the thundering herd of angry women protesting the new mammograph protocol change. The voice is loud and clear. However, we fail to have a test for the life-time cumulative radiation dosages you have gotten since your birth. Be the doses came from natural, environmental and medical. The new guideline supporters also point out that radiation from mammograms can be a cause for new cancer.

Doctors order new radiation generating tests without blinking an eye. I understand CT scan is a very bad radiation source. When confronted by my question on how much radiation I already got in my body, their eyes dazed and not a single doctor can even guess how much I already have gotten. Why can't they issue badges like those people working at the nuclear reactor sites? Whats appalling is that no one knows what is the limit. The Hiroshima data showed that every person is different in his or her maximum safe total dosages. On such an important issue, no one is taking this issue seriously. Yet, they cite this as a danger for mammograms.

I certainly have no answer to this but am furious on the medical experts who seem not to care.
__________________
Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
CLTann is offline   Reply With Quote
Old 11-24-2009, 09:43 PM   #2
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: why is there no test for cumulative radiation

You made a very good point. I remember seeing a report about CT scans and radiation. Now it is possible to get CT scans and other major scans for all kinds of reasons even if a person has not offically been diagnosed with a disease. There are even facilities specifically for that purpose.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 11-25-2009, 09:20 AM   #3
suzan w
Senior Member
 
suzan w's Avatar
 
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
Re: why is there no test for cumulative radiation

Good point!!! Probably the test to measure cumulative radiation would include more radiation??!!! We should all be glowing in the dark.
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
suzan w is offline   Reply With Quote
Old 12-01-2009, 07:29 AM   #4
Sandra in GA
Senior Member
 
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
Re: why is there no test for cumulative radiation

I think the recommendatin to wear radiation counting badges is an excellent one. With all the tech knowledge these days, they should be able one that would keep up with multiple patients at the time. Ann, you are one bright lady!
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
Sandra in GA is offline   Reply With Quote
Old 01-30-2016, 01:16 AM   #5
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,012
Angry Re: why is there no test for cumulative radiation

As an early stage bc patient who has had multiple CTs over time, I have posted before about the common sense need for tracking radiation exposure to each patient over time, using badges. If they can require rads techs to be monitored with badges for their exposure, they can track OUR exposure. And there is no excuse for not keeping count now that our records are computerized.

This linked article provides some helpful information, although it only provides estimates for sequential exposures by mammograms. Imagine how much more rads one gets through the use of rads for treatment in addition to periodic mammograms. It makes me wonder if perhaps in the long-term, I would have been smarter to choose breast removal instead of lumpectomy followed by rads tx followed by yearly mammos.

http://www.cancertherapyadvisor.com/...rticle/469436/
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
AlaskaAngel is offline   Reply With Quote
Old 02-01-2016, 05:38 AM   #6
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
Re: why is there no test for cumulative radiation

good idea. how to we get it to happen? I've had severe side effects from the radiation given as cancer treatment alone. I tried to get someone to put my side effects down to note how many people have these side effects, they didn't seem the least interested but I think it's important. I had an artery 100% blocked, a heart attack, had to have angioplasty and stent put in and a lung full of fibrosis and basically useless. I'm not angry but I think it should be noted
__________________
sarah is offline   Reply With Quote
Old 02-01-2016, 09:08 AM   #7
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,012
Re: why is there no test for cumulative radiation

Sarah,

Part of the problem is the specialization of medical care, and the emphasis on precautionary over-treatment as a rule.

Radiologists report the facts as they see them to the best of their ability and make recommendations about repeat exams based only on the exam they were asked to do. The decision-making with the patient is done by the patient's NPs or other providers, who have a more limited idea of just how much radiation is involved and no accurate count as to how much a patient has already had, for making their recommendations.

Radiation departments also are notorious for being backbone money-makers for institutions, and the bean counters like that.

I think concerns are being voiced by reputable large radiology programs. I just think they need more pressure from consumer groups and pressure for such sources as ASCO to be more proactive about publishing standards and guidelines for using computer technology to start keeping counts.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
AlaskaAngel is offline   Reply With Quote
Old 02-01-2016, 10:50 AM   #8
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
Re: why is there no test for cumulative radiation

I agree and as I said, I'm not upset after all I'm still here 11 years later and it looked really bleak 11 years ago when I had my recurrence. I think it's important to know about for younger people in particular.
__________________
sarah is offline   Reply With Quote
Old 02-01-2016, 04:42 PM   #9
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,596
Re: why is there no test for cumulative radiation

Several thoughts - for sure before breast cancer, It never occurred to me to worry or think about xray exposure.

When I first was diagnosed, in the stone ages, 1996, I was so burned after radiation that I had to wear duo-derm (artificial skin) for around 2 months. I definitely recall saying "I'm sorry, what CURES cancer?? Chemical poisoning and radiation burning?!!!" AND "What causes cells to go crazy and result in cancer? Oh, let's see, that would be radiation exposure and chemical poisoning? I guarantee that someday this treatment for cancer will be akin to blood-letting. Barbaric!"

About 3 or 4 years ago, my oncologist said she wanted to spread my PET/ct's out, to minimize radiation exposure, unless there was a reason to do sooner, I began every 4 months, then every 6 months and then went thru a period of time where I just couldn't be tortured and switched to about every 9 months.

Most recently, the radiation oncologist mentioned that she not only has to figure out the best exposure to kill the MF cancer, but that she also has to keep track of my life-long exposure. I was surprised to hear that she was tracking me as a whole human who has been radiated several different times in the past 20 years.

With regard to the cracker-jack Style Rads Exposure Ring, it seems like you should be able to buy one at your local Rite aid.

My personal conclusion is I didn't have a choice, or a better option at any time that I was exposed to rads, it was a fight at all costs to stay un-dead.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, to remove skin mets. Not able to get clear margins. So schedule another surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4.
"FAILED" PETscan on 4/2/13 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 and due for MRI brain check (check please!).
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
July 2016 - continue HAP plus Xgeva. Not NED not DEaD.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka TBFW (this better fu*king work)
JAN 2019 - TBFW aka ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC. Happy cancerversary to me.
MAY 2019 - herceptin/xeloda & cramming in life
SoCalGal is offline   Reply With Quote
Old 02-01-2016, 05:24 PM   #10
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,012
Re: why is there no test for cumulative radiation

SoCalGal,

I've sorta gotten to the Ancient History level myself (2002, at age 51). I agree with Sarah that because younger people may be more vulnerable to the early exposure and toxicity, I have concern about them in particular.

However, I don't understand why it is taking so long for any formal general guidelines to be in place for tracking our repeated exposure to rads from the very beginning. I'm glad to hear that at least one doctor seems to be aware and actively doing it.

As an Alaskan who was diagnosed initially in Alaska, and then seen in Seattle at a cancer center for mammos, MRI's and recommendations (with additional CTs and imaging in Alaska, and then eventually also breast radiation post-lumpectomy in California).... the total for cumulative exposure is a little harder to track, but in the best interests of the patient, I still believe it wouldn't be impossible to do it accurately. My providers never had a clue when I spoke with each one as to what my rads exposure over time had been.... and still don't.

They need to get on it. It has been 14 years since I was diagnosed with cancer, and I'm sure that in that time-frame, there have been plenty of care providers who completed advanced training to competently THINK about such things, who have also been diagnosed with cancer...
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
AlaskaAngel is offline   Reply With Quote
Old 02-01-2016, 05:58 PM   #11
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,596
Re: why is there no test for cumulative radiation

Very good points, AlaskaAngel indeed. At it's simplest form, adding up exposure is a math problem.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, to remove skin mets. Not able to get clear margins. So schedule another surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4.
"FAILED" PETscan on 4/2/13 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 and due for MRI brain check (check please!).
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
July 2016 - continue HAP plus Xgeva. Not NED not DEaD.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka TBFW (this better fu*king work)
JAN 2019 - TBFW aka ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC. Happy cancerversary to me.
MAY 2019 - herceptin/xeloda & cramming in life
SoCalGal is offline   Reply With Quote
Old 02-02-2016, 03:48 PM   #12
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: why is there no test for cumulative radiation

I hear you and with early stage or systemic disease that might be reasonable. In my case it isn't like an extra scan is going to stop us from needing to see what is going on, we won't say she's had enough radiation exposure so let's hold off.

I have noticed that all of the therapies are fairly one-size fits all. Chemo they adjust for body weight or sometimes change because of side effects but not so often. Radiation seems to be even less flexible. My naturopathic onc did his residency in radiation oncology so he had some better insight into the discipline. He said some studies have shown that even when the skin reacts badly that some cancer cells can survive and the dosages are set to try to cause maximum cancer-killing with the treatment. The problem is that my cancer or your cancer might be more susceptible to rads than someone else's cancer and so these standard dosages might be total overkill in us.
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
agness is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:15 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2019, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter