Hi all
I am new at this as my mother was diagnosed with CUP cancer in September 2011 at the age of 64
It took approximately 3 months of mis-diagnosis with treatment commencing on a rare cancer named GIST cancer before the diagnosis for CUP cancer was provided
Chemo commenced Vinorelbine and carboplatin (as the thought was maybe the primary was from her lung) and she has just finalised her 4th cycle
Ma has had her scans taken which was approximately 2 months from the last ones…with devastating results with the cancer showing growth in the lung, liver, abdomin wall and thigh muscle and a new small growth in the brain.
We go back to see the specialist today and i have been researching alot of information however have not been able to access the sister site for Jane in Australia….? has anyone else had any problems.
I have found all your comments helpful with the LAB21 and CUP One trials etc to assist with the oncologist discussions today however I will respect and follow what ever my Ma wishes from this point.
If there is any alternative medicines or any further medical information you may find helpful at this point that we may not be aware of I would be greatly appreciative.
thanks again for this site… as you all know it is a very difficult and confusing time for all….
Cheers Trina B
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Hi Trina
My thoughts are with you and your mum. I am not very medically savvy so am not able to comment on some of the things you mentioned – I will leave that to other members more qualified and knowledgeable than I.
You mentioned the Australian website – are you in Australia? I have not been able to access this site either, it seems to have been closed. It is just the google ad that comes up. I have not seen any posts on here from Jane since last year, so dont know if she is still active here.
I hope that others can give you some guidance about your choices and info which may help your mum. It sounds like you are doing everything you possibly can to support her Trina. Continue to check in.
Sorry I could not offer more for you, but I do care and will keep you both in my thoughts.
Take care
Lyn
I got into it this morning
http://www.actiononunknownprimary.org/index.html
BW
John
Hi Trina,
Just wanted to let you know we are going through it with my 63 year old mum too. On first cycle of chemo. Its a frightening and worrying time. lots of love
Donna
Thank you all for responding I really appreciate your responses. You have all helped …Cheers
Thanks heaps John for the link to the website i have now been able to access this.
Lyn thank you for your lovely words and your thoughts it all really helps rite now… cheers again…
And to you Donna, Hang in there I wish you and your Ma all the best of luck with her journey ahead….my love and well wishes to you both…
Mas oncologist has now changed her chemo to Paclitaxol (Taxol) and we are all ready for the challenge ahead…
have been looking into stereotactic gated radiotherapy treatment and will be speaking to doc to see if Ma is a candidate for this type of treatment.
All the best and well wishes to you all…. Trina
Hi Trina
can I also suggest that you consider second opinion with someone who also lists CUP as one of their specialisms and discuss this option with your Mum’s oncologist. If your Mum has had a biopsy there are a number of tests that can be made on the biopsy material to assist in defining the nature/type of the cancer to further assist in chemo choice.
My wife has been on ECX but it has not been succesfull so a second opinion has suggested further tests on biopsy material to identify one of three chemo options-based around Irritocan. Our Onc is now actioning this.
How have you got on with the stereotactic radiotherapy options?
Best wishes
Peter
Hi Peter
Thank you for your suggestion, Ma has had two biopsys one from the lung and one from the stomach so i will certainly look into this and i will speak with Mas oncologist….I really appreciate your help with this.
It sounds like you are on the rite track locating the correct options for the chemo for Irritocan for your wife…. My thoughts are with you both thru this difficult time and i send you all the positive vibes for success with her treatment.
Unfortunately Ma is not a candidate for stereotactic radiotherapy options due to the sizes and amount of tumours present… but no stone left unturned…
Thank you again Peter
Cheers and all the very best to you both
Trina B
HI TRina thanks
you may want your Mum to discuss genetic/molecular tasts on tyhe biopsy material. There is a cost unfortunately and its done in this country through Lab 21 (this site has details.) The Test is specidiaclly for CUP and seeks to identify the genetic make up of the tumour. We had it done and though it didn’t provide relevant info for us -there are others who have found it valuable.
Best wishes
Peter
Dear Trina
I am so sorry you have been unable to connect to my website in Australia. Feedback about the site indicated I needed to make some changes which I have done. This involved a new address which has caused the confusion.
I wonder how things are going for your Ma? Do both of you live in Australia? I wonder if the new chemo treatment has had any effect?
CUP is gradually becoming visible in Australia and there is a little research taking place.
You and your Ma have been in my thoughts.
Please contact me via email: cupaction@gmail.com.
My CUP site is http://www.actiononunknownprimary.org
All the best to you both
Jane B