About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (11)

May 6, 2019 · Thymoma B3 in Cancer

Now on cycle 10. Last scan ( last week) showed some reduction and some growth all minimal Scan deemed overall to be “stable” Though a few issues, stiff knees and some nerve pain from left side tumour area and some tiredness
Overall though coping well.

Apr 16, 2019 · Thymoma B3 in Cancer

Heading to the Marsden for cycle 9 now seem to be tolerating treatment ok. Though have burnt out thyroid so thyroxine now for life but it’s no real imposition against tumour reduction. Next scan two weeks away to assess how tumours are being controlled. N

Apr 2, 2019 · Thymoma B3 in Cancer

Latest news is that after 8 cycles and 16 wk scan all tumours stable. Not the continued reduction I intally observed but good news all the same. My comfort zone is much improved and the constant sensation of chest pressure has eased. Continue to have Nivolomab fortnightly and this time no sweats but chronic pain from inflammation pressing on a nerve in the chest but a few hours of ibuprofen arrested that ( remarkably ) so onwards. N

Mar 17, 2019 · Thymoma B3 in Cancer

Just to say have now had 7 cycles of nevomalab not without a few trials and tribulations along the way, mainly high fevers and chills but due to inflammation rather than infection. I have my 16 week scan on Monday which should reveal where I am currently. Thus far I had seen seen reduction in some tumours of 25% which has eased the pressure on my lung and ribs significantly. Had issues with high thyroid rates and some kidney function levels but all manageable thus far. The medical team seam pleased with progress but still early days with immunology I’m thinking. Will update on latest scan result when I get it. I understand the Marsden still looking to recruit B3 and thymic cancer to the trial. N

Mar 16, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

It is confusing and very challenging trying to find treatments as there are so many points of view but the emerging science is giving some hope to a diseases that are little understood. My journey was one of repeated surgeries over 10 years, chemo and radiology but the B3 repeatedly returned. Was accepted on the opdivo trial at the Marsden, not been without some challenges but it appeared to be reducing my tumours. A year ago I was told there was no treatment as my diseases were inoperable… so it puts you in a difficult place where you do clutch at straws. I think it’s worth a mail to Dr Popat at the Marsden who did acknowledge my initial enquiry. I wish you well and pray that there will be something that gives you hope, because without hope it is a bleak world. Nick

Mar 14, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Nivolumab in Patients With Type B3 Thymoma and Thymic Carcinoma (NIVOTHYM) (NIVOTHYM

In the uk. I went to the Marsden because nothing was really working. Saw Dr Popat who suggested this phase 2 trial checking for acid / alkaline levels but it is helping me with B3 since 2006

Mar 14, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Yes lost some hearing to tinnitus and neuropathy in the feet. However the immunotherapy Nivolomab ( opdivo ) is on a trial at the Marsden ( London ) for B3 and thymic cancer. The details are available on line. So far so good for many of my inoperable tumours had 6 fortnightly cycles so far and reduced some tumours by 25% which I feel is remarkable as chemo did little in the way of reduction. N

Mar 14, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Hope this might be helpful? Having had many surgeries and chemo ( cusplstin and entopside) my B3 stage 4 showed little reduction. Now on a trial of Opdivo and after four cycles showing up to 25% reduction and they side effects have been manageable to date. Nick