WBR Improvement after late toxic symptoms

Portal Forums Radiation Oncology Brain Metastases / PCI WBR Improvement after late toxic symptoms

This topic contains 16 replies, has 9 voices, and was last updated by catdander forum moderator catdander forum moderator 3 years ago.

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August 27, 2013 at 9:01 pm  #1258809    

badita

My husband had WBR in 2006 after surgery for lung tumor metastases in the brain. Three years later he has developed slowly and progressively a neurocognitive impairment: dementia, lethargy, problems with speech and swallowing, incontinence, problems of equilibrium and inability to manage his body. Until recently he lay in bed or in a wheelchair and was totally dependent. Two months ago he began to improve. Today has better cognitive level, can walk, talk, eat alone and have no more incontinence. Is there any explanation for this inexplicable improvement?

August 27, 2013 at 9:39 pm  #1258812    
Dr West
Dr West

To be honest, your husband’s course is remarkable in every way. People alive 7 years after having brain metastases from lung cancer are exceptionally rare, and we’re only beginning to see enough people alive 2-3 years later to learn that several of these people develop degenerative brain problems as a long term side effect of the radiation. Up until the last few years, people didn’t live long enough to experience long term side effects from WBR for brain metastases.

Could he now be experiencing a healing process after neuronal damage from the radiation so long ago? I’m just speculating, but I think that’s possible. But what to expect from here is anyone’s guess. You and he are in pretty much uncharted territory — I congratulate you and thank you for giving me a new sense of what is possible.

-Dr. West

August 27, 2013 at 10:06 pm  #1258814    

bob4beth

That is an incredible turn of events. I am so happy for you and your husband. It gives me some hope.

Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

August 28, 2013 at 10:50 am  #1258835    
catdander forum moderator
catdander forum moderator

Wow, what an incredible story. Thank you for posting even if you don’t get answers here it helps us to see something so positive in such a dire situation.
Congratulations to you and your husband!
Keep us posted.
Janine

August 28, 2013 at 4:07 pm  #1258859    

Jazz

What Dr. West said. Times two.

Jazz


Non-smoker, Dx 6/06 Stage IV Adeno. EGFR+ (exon 19 del), T790m+. Trial: 2cyc Carbo/Doce/Avastin + 2 w/Gem 8 – 12/06; Avastin maint. 1 – 4/07. Alimta + Tarceva 5/07 – 2/09. NED to 8/09. Tarceva 150 9/09-5/11, SBRT/XRS to lung & spine met 2/11. Trial MK2206 (AKT inhibitor) + Tarceva 5 – 12/11. Afatinib+cetuximab trial 2/12 -2/13. LL collapsed. 1/13 PET – new bone & adrenal mets. 4 cyc Carbo-Gem-Tarceva 5/13. Brain MRI 10/13 – clear. Lost Dad to LC 5/13.Anti-PDL1@Angeles Clinic?

January 11, 2014 at 2:32 pm  #1261480    

My wife’s advocate

This is very amazing. I am so happy for you. Is he on any active treatment for the delayed toxic symptoms? Or is there any changes in his daily living routines that may have trigger the turn around in his functional mobility?


Wife, Asian non-smoker, 10/2010 left upper lobectomy, Diag: mod. diff. adenocarcinoma, focal squamous diff. with one AP node involvement. Dec 2010 thru Mar 2011 4 cycle cisplatin/vanorabin doublets completed. July 2011 MRI shown one 1.3 cm lesion with a 2.6 cm cystic component in rt. occipital region. Aug 2011 Neuro excision, confirmed sol. met from lung. Tested EGFR +. SRS irradiation on excision site 9/9/11, started Tarceva 9/26/11. Very difficult side effects. Tolerable after dose reduction to 100mg. Dec 2015 second brain surgery found life cancer cells in large bed of necrotic tissue. Feb-Mar 2016, 12 fractionized IMRT on right occipital lobe. Remain on Tarceva. Aug 2016 to Jun 2017 enlargement of pre-vascular lymph node from 1.4 to 2.2 cm. Mediastinotomy scheduled Sept 2017.

January 12, 2014 at 6:02 pm  #1261512    

njliu

Badita, thank you for sharing this incredible experience. May I ask if your husband has been on any maintenance treatment during the last 7 years?


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 Iressa, great response. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor, 10/13 focal radiation, 1/14 PET Scan:Tumor Resolution, continue Iressa, 6/14 PET shows flare up at same primary. 9/14 CT stable/MRI reappearance of brain mets, 4/15 stable brain mets, 5/15 increase in SUV and slight pleural effusion. 6/15 Afatinib + Cetuximab

January 13, 2014 at 8:15 am  #1261515    

badita

Dear njliu,
He doesn’t want any maintenance treatment. Today he takes only 5 mg escitalopram to deal with depression. Since August 2012, after his doctor diagnosis him the third metastasis back in his lung, he received palliatives care at home because he strongly rejected any type of oncology treatment or additional studies. All he wanted is to let he be in peace. When morphine doesn’t work anymore the palliative care team started talking me about induced coma to prevent his suffering. At that moment he spontaneously started improving. Today he is not as well as he was 6 month before, but he is ok and has a good quality of life. Of course we are supported by physicians, caregivers and psychologist at home. We don’t know what has happened with his neurological disease neither with his lung metastasis. The medical team backs me about no more oncology treatments because this is his will and there is not a healing prognosis.
We go out to dinner, lunch or just to take a coffee everyday. All I give him is peace, harmony and love. I enjoy any precious moment I share with him.

January 13, 2014 at 8:49 am  #1261517    

badita

to My wife’s advocate,
He denies any maintenance treatment. The only change in his daily living routines is that we don’t fight anymore: “I let him do what he want to do”. If he wants to do kinesiology it’s ok. If he doesn’t it’s OK. If he wouldn’t like to receive the doctors, then I leave him to dismiss them. He hates the hospital, so no more tomography. Let him rest all time he wants!! I finally accept that the love of my life is the only owner or his life.

January 13, 2014 at 1:30 pm  #1261520    

njliu

Hi Badita, how about the period from 2006 after WBR to August 2012, was he given any chemotherapy or drugs like Tarceva or Iressa? Thanks for sharing.


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 Iressa, great response. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor, 10/13 focal radiation, 1/14 PET Scan:Tumor Resolution, continue Iressa, 6/14 PET shows flare up at same primary. 9/14 CT stable/MRI reappearance of brain mets, 4/15 stable brain mets, 5/15 increase in SUV and slight pleural effusion. 6/15 Afatinib + Cetuximab

January 13, 2014 at 6:14 pm  #1261524    
Dr West
Dr West

Badita,

I just want to say that, especially in this circumstance, your approach and his seems very wise. I’m very happy that you both have such a good outlook.

-Dr. West

January 14, 2014 at 12:57 am  #1261530    

watu

Very interesting story. Thanks for sharing.
In our case, my dad developed that neurocognitive impairment soon after the WBR. It started with extreme fatigue and progressed over a few weeks towards significant neurological impairment. We are now almost 4 months after WBR and dad spends most of his day laying in bed or sitting a few hours in a wheelchair, sleeping and with a number of other neurological problems.
Although our oncologists believe this is mainly due to the progression of the cancer, the neurologist does not exclude these are also (or mainly) symptoms of radiation-induced necrosis. Nobody knows why dad reacted so badly to the WBR, although the treatment apparently was really effective (his last CT scan was almost clear, showing just one single 6mm brain lesion left – of the 4 fairly large lesions he had).
He is currently just on dexamethasone and nimodipine. Nothing really makes us optimistic for the future.
We continue with palliative care, trying to make him feel (at least) comfortable.


Father (72), no smoker.
4/09 suspicious nodule, upper left lobe.
7/09 lobectomy, 2cm adeno (T1N0M0). No adjuvant chemo.
1/10 found another nodule, lower left lobe (probably unnoticed in 2009).
4/10 completion pneumonectomy, 2cm adeno, 2 positive regional lymph nodes (T2N1M0). No adjuvant chemo.
9/10 PET-CT: negative.
4/11 PET-CT: positive lymph nodes (mediastinal, superclavear).
5/11 biopsy of 1 superclavear lymph node, adeno met, EGFR+ mutation.
6/11 start Iressa.
9/11 PET-CT: negative. Great response to Iressa.
2/12 PET-CT: negative.
7/12 PET-CT: positive lymph nodes (mediastinal, superclavear, axillary).
9/12 PET-CT: positive lymph nodes, higher SUV.
12/12 CT scan: 7.5mm and 3mm brain mets, multiple 3-4mm nodules in right lung, 10mm lesion in liver and osteolytic areas in the XI rib and L3 vertebra. Stop Iressa and switch to Taxotere.
4/13 CT scan: good response to Taxotere. After 5 cycles, only three 3mm nodules visible in liver, brain mets stable.
5/13 Taxotere no longer tolerated + dizziness, nausea, vomiting, aphasia, hearing loss (brain mets?). Start re-challenge with Tarceva (150mg per day). Significant improvement of physical conditions after only 2 weeks of treatment.
8/13 Tarceva seriously affecting kidney function. Dose reduced to 100mg every other day.
9/13 Sudden onset of neurological symptoms. CT scan shows 4 brain lesions (29mm, 28mm, 16mm, 15mm) with cerebral swelling + multiple micro nodules in right lung. WBR carried out (2000cGy over 5 fractions).
10/13 Significant physical and neurological decline soon after WBR. Only palliative care.
12/13 CT scan: all brain lesions disappeared (only one single 6mm nodule left), micro nodules in right lung significantly reduced (were they really cancer?). Still with significant neurological impairment, likely to be associated with radiation-induced necrosis. On palliative care only (dexamethasone + nimodipine)
02/14 Dad passed away peacefully on Feb 8th 2014.

January 14, 2014 at 12:16 pm  #1261534    
catdander forum moderator
catdander forum moderator

Hi watu, thanks for adding to this discussion. I’m so sorry your dad and family are going through this. How awful it is for you, I sincerely hope it isn’t as bad for him.
Janine

February 12, 2014 at 2:15 pm  #1262262    

badita

Sorry njliu. I didn´t see your post. He wasn´t given any drug. He didn´t have any symptom while he was under radiotherapy. We didn´t know anything about late toxicity.

November 10, 2014 at 1:30 pm  #1267061    

badita

Nor Lung cancer neither brain cancer could kill my husband. Medical malpractice did. He died due to sepsis caused by aspiration of the nasogastric tube that had been placed after surgery to remove a chronic subdural hematoma product of some old unknown bump. He survives the surgery without any problem but he died for respiratory aspiration. It’s madness. He never gives up. He was a hard warrior. My eternal gratitude to surgeons and Oncologists who made possible the miracle that he survives the last 10 years.

November 10, 2014 at 2:31 pm  #1267062    
JimC Forum Moderator
JimC Forum Moderator

badita,

I am so sorry to hear of your dear husband’s passing. He fought a brave battle against cancer, and I am glad that the two of you were able to enjoy so much time together after his diagnosis.

Sincere condolences to you, with a wish for peace and comfort.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 10, 2014 at 2:38 pm  #1267063    
catdander forum moderator
catdander forum moderator

badita, I’m very sorry to hear about your husband’s passing please accept my condolences. I want to let you know how loving your comments were about letting your husband live out his life as he wished. I know how difficult it is to let go of the decision making process but I know you would wish the same for yourself.

With hopes for peace,
Janine

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