Hello, Newly Diagnosed

Ruth I have rarely been accused of being wise. Must be thinking of someone else

B

MowerMan

Since posting about my perception of 'hesitancy' of a referral I've been copied in to a letter sent from my local hospital to Dr Metcalf inviting his input to my case (along the lines you were thinking Barry ) and I also mentioned to the oncology nurse, who I've been speaking to recently, about the involvement of specialists in ACC, like Dr Metcalf and Professors Harrington and Nutting at the Royal Marsden which seemed to be well received.  

Thanks for the info about the profiling, Ruth, I shall ask about that as well today. 

The infection seems to be easing, though slower than expected, but I coughed up a nasty lump in the night and so asked GP to check it out this morning as the antibiotics end tomorrow - it could be old stuff but it'll be sods law if I leave it!!  Hoping I don't need more and the biopsy can go ahead Friday.  

Will keep you posted, and thanks to both of you again for your help.

Oh that's great that they are happy to involve Rob. He is fantastic.

It is an ongoing wonder to me about the things that a) the human body can produce and b) our lack of embarassment about sharing details (including photos) of all the hideous details :) Go for it. I have no upper limit for hideous details :)

B.

Coughing it up could be a good thing and you will feel better x

@ruthjp

MowerMan

Quick catch up - no gory details tonight, though I will say how thankful I am to have a husband that doesn't mind a looksee  and yes, much better out than in, but oh boy, the effort to cough/huff it up!

Had the 2nd biopsy and a 'clean up' which seems to have helped clear the infection as well - should get an update this week or after the bank holiday. Back on stronger antibiotics and hoping the infection doesn't take a hold again but so far so good.  

Now a case of waiting and I'll update again.  Thanks again both for your help with info.

Well done. It must feel good the biopsy has been done .

hope you continue to feel well and the abs do their job xx

Hello Ruth and Barry MowerMan

 I've not been on here for some time, the longer you leave it, the harder it seems as so much has happened, but I thought it high time to check in, if only briefly.  

I'm doing well with the radio therapy I'm having at Addenbrookes and counting the days now - 7 to go + the 2 weeks post treatment peak effect.  I haven't yet needed to use the PEG I had fitted 2 weeks ago but I'm finding the various pain meds are helping a lot, both through the day and specifically with swallowing.

Dr Metcalf has been in touch a couple of times and we'll speak again once I have the follow up scan in a couple of months.  My tumour is MYB positive which is good since there were several irregularities with the normal features of ACC.  The tumour is also positive for gene mutation AKT1 (GLU17LYS) and I may be eligible for targeted therapy - that's a bit round the corner, but good to know.

Ruth, I've come across a post of yours whilst roaming the site late one night and sincerely hope the current treatment you are undergoing is going well. 

Sending you both my warmest best wishes.

Cath Xx

Hi Cath

It is good that you are now hooked up with Rob, he is a star. And given the mutations you have it sounds like there might be more than one targeted drug or trial that you can get on. The more the merrier I think. Whatever hits ACC and knocks it back is all good.

The radiotherapy countdown was a big thing for me, I had mine through the Christmas holidays so I had a 4 days break over either Christmas or New Year because of the way the weekend and holidays overlapped, and I really wanted to get on with it, so as to get to the end quicker. The last one is a big day, I hope you enjoy leaving that stage of this business behind!

Keep us posted

All the best

Barry

Thanks Barry, coping through Christmas / New Year must have been very hard, but hey, you did it and here to tell the story too.  I've seen a couple of people's final day now and the elation is tangible even though it's clearly been a struggle to get to that point.

I have a review meeting on Wednesday when they'll decide if I can cope with the full dose as they're concerned about ongoing effects at the end of treatment but so far so good - actually every one is saying exceptionally good, so fingers crossed. Have to say the care from every one throughout this has been top notch.

Be in touch again soon.

While the end of my radiotherapy was a great day - never having to be clipped down under that mask again - I think I just went home and slept, it was just increasingly tiring. I didn't exactly go and hit the town

B.