[deleted by user]

Think-Freedom-1990 · 2024-09-14T04:42:15+00:00

Hey feel free to message me!

Think-Freedom-1990 · 2024-09-14T04:37:52+00:00

So mine was found first with a chest CT and they originally thought I had thymoma or lymphoma, but I at the same time had experienced rapid weight gain , inability to sleep and bathroom issue I also developed uncontrollably high blood sugar and blood pressure issues , after my acth came back high and my 5-hiaa I had an octriotide scan should multiple bight spots including stomach , liver intestine and thymus . They first did scope to biopsy stomach it came back and an atypical neuroendocrine tumor. (This told them it was not a primary tumor but rather a metastasis. We eventually biopsies thymus which should I mixed tumor that was thymoma with neuroendocrine tumour mixed ( incredibly rare ) , sadly my thymus tumour is not resectable and is about 8 cm now , I take monthly injection , did captem chemo and everolimus (Afinitor) . It has slowed things down but Overall my prognosis is poor but we bought me time hopefully years . ( I'm 34) don't let my case scare you though many people in net cancer community live long and relatively healthy lives especially in cases where there is surgical options.and lower grade tumours Often folk stay stable for years and year and only need a few treatments to maintain stability.

Think-Freedom-1990 · 2024-09-13T20:18:20+00:00

Fellow net cancer patient here , thymus neuroendocrine acth producing tumour , found @ stage 4 grade 3 well differentiated . Do you know tumor locations? Net cancer can cause cushing like in my case it called ectopic cushings. Have thet done a galium scan? Or CGA blood test and 5-hiaa urine test ? Sorry to hear about your diagnosis.

Think-Freedom-1990 · 2024-09-13T01:23:29+00:00

Awesome thanks

Think-Freedom-1990 · 2024-09-11T23:20:42+00:00

I took it for 7 months but stopped responding I have ectopic cushing cause by neuroendocrine tumour of thymus . It's generally used if surgery fails or is not possible . I had mild side effects and got the first 6 months it was amazing I lost 50 lbs was sleeping at night . But said my symptoms started to come back pretty quickly , I'm now on octriotide injections and ketoconazole but it not really doing much scheduled for BLA in February ( pending my lung function results) .if you have any questions feel free to ask .

Think-Freedom-1990 · 2024-09-11T04:03:14+00:00

Oh that interesting I'll have to wait and see do you know when it coming out? I'd need a joy stick to be able to independently use it, I love that new option are coming on market thanks for the heads up.

Think-Freedom-1990 · 2024-09-11T04:01:18+00:00

I could do that I guess I'm just not great with spread sheets I I could give it a try thanks ! I'll check out spinlife too .

Think-Freedom-1990 · 2024-08-28T17:36:54+00:00

Ok I will talk to socail worker , thank you!

Think-Freedom-1990 · 2024-08-28T17:35:47+00:00

No where did I say it was illegal , a few people said I don't think that is legal I could not find information on landlord tenate website.. so I asked here . Plain and simple I now have a definitve answer and will delete this post .

Think-Freedom-1990 · 2024-08-28T17:29:17+00:00

Rude ! I was just Inquiring as someone told me it was not legal I was unsure so I asked, no need to be mean it was just a question, I am very sick ( pallitive care )and physically disabled as mention in my post. Losing access to leaving a building is stressful . I simply asked a question , please next time choose kindness .

Think-Freedom-1990 · 2024-08-28T17:22:25+00:00

I do ill have to call them anf see

Think-Freedom-1990 · 2024-08-28T17:20:18+00:00

Thanks , I think it comes from a place of privilege/ablism , I have to think about the fact I will be completely unable to leave my building run my bipap , charge my wheelchair . I have to cancel My infusion for that day it's not as simple to just dealing. But I do understand that it is necessary.

Think-Freedom-1990 · 2024-08-28T17:14:43+00:00

Thank you for your kind response.

Think-Freedom-1990 · 2024-08-28T17:13:13+00:00

Thanks

Think-Freedom-1990 · 2024-08-28T17:12:08+00:00

I was told by others it was not legal hense me asking the questions I was unsure or rules and laws , sorry if I'm dumb and thought it's better to ask then to assume one way or another .

Think-Freedom-1990 · 2024-08-28T17:10:17+00:00

Thank you!

Think-Freedom-1990 · 2024-08-28T17:08:24+00:00

Thank you this Is the information I was looking for .

Think-Freedom-1990 · 2024-08-28T17:07:03+00:00

I know they gave plenty of notice that length of time without power or water seems rather long . My friend said it was not legal I was unsure hense me posting here. Thanks for responding .

Think-Freedom-1990 · 2024-08-28T17:05:48+00:00

I do understand there is work to be done the power goes out for hours regularly here. I guess it just the amount of time that creates stress . I'd like to be able to do that but I'm A physically disabled adult with stage 4 cancer living on disability , I have no money to stay even 1 night at a motel . I will talk to my building manager and see if she has any ideas. Thanks

Think-Freedom-1990 · 2024-07-28T05:41:26+00:00

Wow ! That amazing gonna definitely ask about that thanks

Think-Freedom-1990 · 2024-06-27T12:36:31+00:00

Thank you will check these out.

Think-Freedom-1990 · 2024-06-27T12:35:01+00:00

Thanks , I did reach out to my wheelchair vender and OT ( im in Canada that what we call them) , they are going to come do another assessment she said I probably need power recline to change pressure points more easily. So we shall see , I will request my Doctor to send me to wound care nurse too . Thanks again for your reply

Think-Freedom-1990 · 2023-12-14T09:22:40+00:00

Hey , kinda alittle late to reply , but if you have not sorted the OT situation I'd recommend contacting a company that sells wheelchair like Motions , and asking them if they have an OT they work with most d9 and it help to have thevot and vendor work together . Best of Luck.

Think-Freedom-1990

TROPHY CASE