Thymic carcinoma stage 1V

Hi Nelennelen and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I have had chemotherapy, but for a different type of cancer, so I'm not sure how relevant my experience would be. However, I've done a search in the group to see if I could find anyone else who has mentioned having thymic carcinoma and found that  posted about their partner having this type of cancer a year ago. I've 'tagged' them into my reply to you and hope they'll pop on and tell you about their partner's experiences.

While you're waiting for a reply it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Nelennelen, how are you getting on with your chemotherapy? Noting the timing of your post, you might well have finished now. I really hope you’re coping okay and that the chemo has had a positive effect on your cancer. My partner was diagnosed with thymic carcinoma in January and has just finished his sixth cycle of chemotherapy. It seemed pretty brutal but we’re praying it’s been worthwhile.  

Was surgery ever an option for you? Also, have you been doing any complementary treatments to chemotherapy?

Hope you are well. 
Emma 

Hi, I am new to this whole Macmillan group. 3 weeks ago I was diagnosed with advanced metastatic Thymic epithelial cancer (on liver biopsy). I have just completed urgent Radiation Stabilisation Therapy given over 10#s (to minimise side effects) and decrease pain across Thoracic spine down R upper arm (cancer currently limited to mediastinum and two local linear pleural narrow bands plus SVC Obstruction and a few liver metastases. The next steps are thought to be a combination of a Platin (e.g. carboplatin) plus a Taxol followed concurrently with ImmuneRx (e.g. Pembrolizumab or equivalent) ever 3 weeks for a bout 12 weeks before deciding to trial ImmuneRx alone if successful in maintaining/controlling or slowing down the situation. Are there any real data on a definite direction to go at this stage beyond what I have outlined. How best can I start trying to minimise any Rx side effects and get my body & mind ready for the onslaught coming after my, hopeful 3-4 weeks break over Christmas. My cancer is very rare so hard to have any real prognostic certainty (3-6/12 with Rx to 25% chance of surviving 5 years or more). Difficult for my wife and family to process and plan around all this uncertainty.

Merry Christmas to all and thanks so much for all your help,

Cheers, Thymic ghost

PS what is the best site to find complimentary supportive care information about what I can do to build my own body resilience to get through ChemoRx and ImmuneRx?

Hi Thymic Ghost.

I’m very sorry to hear about your diagnosis. All cancers are horrendous but the rare ones seem even more scary. 
My partner is on third line treatment for his thymic carcinoma now, after two failed treatments. I’m relieved you’ve mentioned carbo and taxol treatment - that’s been the most effective for my partner so far. 

I’d recommend you joining the Thymic UK group on Facebook. That is where my partner has found most treatment options as his consultant doesn’t really know what to do for the best given it’s such a rare cancer.  There’s loads of information on there with lots of people in the UK and America sharing their stories. My partner was never on Facebook before but has found it really valuable. I hope it can help you too.

I’d also advise your wife to join the ‘carer’s only’ page on the MacMillan community too. Might help her to cope. 

Wishing you the best of luck in your treatment. 

Ema-roo