Hello, again

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Hi ladies, it’s been last summer since I posted on BCC forum (I started a private fb page and have a lovely group of mixed primary and secondary ladies, very supportive).  I feel today though that I can’t really get the right help there and am hoping for your advice.

I was diagnosed double whammy last April, with secondary mets in liver.  I went straight on to chemotherapy, having a course of docetaxol in conjunction with Herceptin and Perjeta as HER2+.  My CT scan after Docetaxol and again in late November showed no signs of the disease, yippee!!.  I have been having 3 weekly H&P, with one period where I went 4 weeks between (in February).  I got CT scan results this morning at 12 weekly clinic appointment and have been told that although my liver mets are still nowhere to be seen, and my lungs/thorax is clear, I have a recurrence in left axilla (2 nodes, 14mm and 12mm).  I had an exam, and the registrar couldn’t find anything (deja vu, as I had no symptoms pre diagnosis).  I have slight pain in both breasts, in the areas beneath the skin where my underwire bra sits, for the past month, but again on exam she couldn’t find anything…Registrar was not sure how to progress, as there is a good chance they will stop giving me herceptin and perjeta (cost is too high if there is progression apparently) so she’s seeking advice from a senior doctor and asked that I come back in 3 weeks.  Meanwhile, continue with the H&P treatment.  

Now, my point or question FINALLY?? What should I be asking for at this meeting?  I don’t know what to expect.  I was reminded that there isn’t a lot of different treatments; I can’t remember what she said I might be moved on to.  I’m scared that the H&P is “gold standard” and I will be on a downward path already, within a year…The last registrar I saw in December was delighted to tell me I would be around for a long time, and that I was responding very well to treatment.  

So, can anyone else tell me what happens next?  Should I ask for a more detailed scan, like an MRI to check the liver? Should I consider radiotherapy for the nodes?

Sorry about the length of this…I don’t have a special someone to share the burden or help with the decisions.  Thanks xx Sheila

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Have they considered TDM1? kadcyla. 

I think that this drug is appropriate for those who have had Herceptin.

my lumps under my breasts are just scar tissue.

 

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Thanks for your reply…that sounds like a possibility (I neglected to write down what the registrar said). I’ll look it up. And I never had surgery, so no scar tissue.

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Hi there - I think you are in a slightly similar quandry to me. After a lot of messing about which I won’t bore you with, a week today, 1st June, I finally get to see my oncologist. At the moment I think I have cancer in neck and spine and these are secondaries.

 

Some of your message was in a foreign language to me - not your fault! I’m at the very start of a new journey when I see my oncologist and I don’t know what questions I may need to ask! I too am on my own and don’t have someone to chew the fat with! Perhaps we can support each other!

 

Smelliedog xx

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Congrats!!! I just came on here because I have to sign up for the clinical trial involving those chemo drugs but with an injection so I didn’t have a clue what to do-if TAXOTERE is the same as DOCETAXEL then I’m so pleased to read your post.plus my pain is just where my bra wire sits which is how you described yours.thank you so much for making me feel There is some hope xx would love to hear more news from you and catch up.thanks debbie

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Hi,can you let me know how to find your Facebook page…what is it called? Thanks ))

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Hi, I can really empathise with you not wanting to let go of something that is/was working, I hope you find out what’s happening as that’s the worst part, isn’t it. 

Hugs and love

 

XBlannaX 

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Sheila how are you getting on?? I start on identical chemo on July 22nd .I have multiple liver mets/lesions x

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Hello Sheila,I started my chemo yesterday-PERJETA and H&P.How are you getting on with your plan and also your nodes? Thinking about you as you are def fighting off your cancer.I would love to get news from you,best wishEs and love Deb xx

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Hi Sheila

 

youve dropped it of sight 

how’re things going?