SNTCS - Sinonasal Terato carcino sarcoma diagnosis

Hi Sparrticus71 

Welcome to the forum but really sorry to see you here. 
From your diagnosis it does indeed seem you have lots of cell types that are involved in the cancer. I hope you get a timely answer from The States. I guess they have a bigger pool to choose from

Ive been here for five years and I can’t recall anybody having Etoposide. 
Stay with us. There are folk who can help you with the radiotherapy but Macmillan have a chemotherapy group Chemotherapy forum 

You might get a more helpful answer about side effects and coping there. 

Beesuit said:

Ive been here for five years and I can’t recall anybody having Etoposide. 

Well I have a bad memory. Here’s one  St Bernard Lady 

and another 

community.macmillan.org.uk/.../1915742

Hi welcome  from me I’ll have a thjnk as well but feel Dani’s right with our lovely Mo if yih click her name St Bernard Lady you’ll see how extensive her treatment has been . Sadly nit the same as your cancer though. Hope the states can find something for you. Radiotherapy we can help with. 
Hazel x

Hi Sparticus 71

I had this combination of Chemo for neuroendocrine with both small cell and large cell lung cancer.  However mine was just 4 sessions for a mop up as they surgically removed the small tumour first but the chemo was due to a small ammount in local lymph nodes.  Regarding the mixture I personally tolerated it well did not even lose all my hair.  The only problem was after the first dose my neutrophils went to zero so they adjusted the dose and i then had to take antibiotics after each treatment to lift my bloods quicker.  I even felt well enough to drive myself.  Hope this helps.  I used to have two infusions, one of each, then pills for a further 5 days.  Good luck I hope it works well for you.

Best Regards

Mo

Hello Mo. How lovely to hear from you. How are you and how is Sherman? 

Hi Dani we are Ok Sherman is being his usual naughty self.  Waiting for Hospital to decide at MDT next struggle as after annual CT it seems the second lung nodule is growing and i have a few on my face again but think these are the Keratoacanthomas.  Right ear still not totally clear but we have decided to watch and wait for a while, so still fighting the good fight but at least am still here.  Have decided to give up work at Xmas only 6 months early but just so tired and i want to get at least one cruise in while i can.  Hope all is good with you.

Mo

Heck! Sorry you’re still fighting. Hope it’s not to hard. Send us pictures from your cruise … huge hugs 

Hi Sparrticus71,sorry to hear your diagnosis,it sounds very similar to my husbands,as I think I may have previously mentioned to you  he was diagnosed with SNUC (sinonasal undifferentiated carcinoma stage 4 ) we were told this was too a rare and aggressive form and it was too dangerous to operate as it had broken through the cribiform plate.He has now completed his 3 cycles of TPF chemotherapy,he felt pretty groggy at times,nauseous,sweats,rancid taste which made it difficult to eat without vomiting and severe constipation on the whole though he felt rough from day 6 (after pump removal) and through to day 11 and then gradually started to feel better.Tomorrow he completes week 2 of his 6 weeks radio/chemotherapy,he feels mainly tired,nauseous and has a sore throat,roll on the end of the 6 weeks.HOWEVER after saying all that it’s not to say you will react the same,everyone is different and it is a different type of Chemo you are having but as the Oncologist said to us,there’s no point sugar coating it,it’s absolutely shit what you (and everyone else  on here) is going through but it’s happening and as hard as it is we just have to deal with it best we can.When I first came on here I had messages of support most of which said try and stay positive and take one day at a time,that’s the best we can do.The chemo has significantly shrunk my husbands tumour so we are holding onto that cos that was a great bit of newsI hope you get some good news from the US like you say there are lots of survival stories,keep talking and asking questions it’s a big help.sending positive thoughts your way 

Hi Mo hugs from me as well great re  retirement works overrated ! Keep in touch Hugs Hazel xx

If anyone in the future finds this post please check out https://www.whoistherealbb.com/199709076.html

its from Becky Busch, an american lady who came through SNTCS frm 2009-2014. Great read