Purchase anti PD1 outside trial setting - 1268697

Forums

Hi,

My mother has stage 4 NSCLC adenocarcinoma (EGFR, ALK, PDL negative) for almost 2 years. She has had previous 3 cycles of chemo. Her disease is progressing..She waited to enter the PDL1 trial but unfortunately she was PDL negative..

Are there any trials currently recruiting PDL negative patients......

The Checkmate 17 trial results are very promising..

Is it possible to buy the Anti PD1 antibody and give it outside a trial setting? if so do you know any contacts to procure?

Thanks,

Sadasivam

9mm lung nodule and lytic rib lesion - 1268659

Forums

Cheryl3700
Hi, I found this site highly helpful back in 2011 when my mom had lung cancer. Now finding myself back here, husband having issues. First symptom, swelling in RUQ. Little pain. Dr thought hernia, ultra sound negative. Onto CT scan found lytic lesion of 7th rib on right side, plus 9mm nodule in lower left lung. He also had 2 confirmed SCC skin cancer last year on scalp, grenz radiation 8 cycles.
I know SCC skin can metastasize, but rare. Indications of the SCC report were not concerning for spread.

Longest living survivor of lung transplantation after having had BAC lung cancer - 1268649

Forums

My sister Debra had a lung transplant in February, 2008 at Toronto General Hospital, Toronto, Ontario Canada after having had IV stage B.A.C lung cancer (the kind that is least invasive to the body outside of the lungs).

She just went for her 7th year post transplant check-up and is considered "stable".

Does anyone know of or has anyone heard of anyone in their 8th year of post lung transplant life after having had B.A.C lung cancer?

Her Dr.'s at Toronto General call her "the miracle lady".

Thanks,

Laurie

Strange neurological symptoms while on immunotherapy trial - 1268642

Forums

Hi
I am in my first month of immunotherapy trial
(MEDI 4736 phase 1/2). Only had one infusion.
This week a strange episode happen to me. Part of my tongue,
left cheek and than fingers in left hand went numb for about 10 -15 minutes.
Immediately after this episode I went to urgent care unit in my
Cancer Center where they admitted me to the hospital,
run all tests ( MRI, ct, echocardiogram, encephalogram).
My CT and MRI were clear, as for the other tests- no reports yet.
However they discharged me from the hospital next day so I assume by now

Recurrence after 10 years - 1268641

Forums

After 10 years without treatment (see below for clinical history), my husband has a recurrence: a very aggressive tumor on his clavicle bone. Started last November as a clavicle fracture. X-rays taken in December and early January showed a fracture that didn't heal and that the bone was dissolving. All the tests (bone scan, MRI, X rays of pelvis, spine and skull) were negative. He'd had a check up PET and CT in September that didn't show any new disease. Finally a bone biopsy at the end of January showed that the few cells that were non necrotic, were poorly differentiated NSC carcinoma.

Screening for survivors in family with 2 lung cancer deaths - 1268634

Forums

I know patient/person specific advice is prohibited so let's speak hypothetically! :) Mother of 5 children died approx. 6 years ago in early 70s from ERGF + adenocarcinoma nsclc. Had very good Tarceva response which prolonged survival. Tragically 44 y/o daughter was diagnosed this past June with stage IV adenosquamos nsclc. She was symptomatic with hemoptysis which brought her to treatment. Her cancer genome sequencing expressed many mutations and Tarceva and dbl platinum based chemo did nothing to halt progression. This mother of 3 young children succumbed to the cancer last week.

Pancoast update - 1268631

Forums

Wow..it's been several months since my first post & diagnosis. I was diagnosed with a large pancoast tumor in my left lung last July. Had most of the typical pancoast symptoms with the pain in left shoulder, arm, and numb fingers. This mass was deemed inoperable and incurable at the time. Fast forward - I had 35 radiation treatments & 4 low dose carboplatin/taxol & 4 standard dose carbo/taxol treatments.

Mom- 3B adeno progression, 2nd line ideas? - 1268625

Forums

Hi Dr. West and GRACE team, amazing resource you have all built!

My mom, 69 never-smoker was diagnosed with stage IIIB adeno in Oct 2013. EGFR/ALK wt, they have not done PD-L1 IHC. First line since then has been a PD1 trial with Ipilimumab/Nivolumab. First ~8 months were stable, even slight regression, despite 4 month break due to elevated liver function. 8 months since have had some growth. Overall largest lesion grew from 3.2x1.9cm (Oct'13) to 3.8x3.7cm (Feb'15), we're told 28% growth so over RECIST PD threshold.

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