Recurrence in lymphs

Oh so sorry to read this Star74 however you do get a good response to chemo and therefore I am holding out that SABR will become an option and the two combined will do the job .

I do understand the thought of not having surgery is daunting but this is still a good plan .

What chemos are they thinking of using ? 
Is your oncologist open to you starting after the break ?  

Is there an option of starting with two chemos for a few , scan then add in a third if required ? Or do you have to decide right away ? It seems a big decision for the patient to make .

Whilst this is a blow you are very chemo responsive and there is no reason to think that won’t happen again and knock this right back down .

Take special care and always here for you .

Court 

Thank you court 

Yes, it's a huge blow, I was just getting my life back, I looked in the mirror and I look how I did before cancer.  I also saw a new Onc who I haven't met before which didn't help as my old Onc is so positive and she knows me well.

I'm glad SABR has been mentioned as an option and my CNS was pushing for this too and she also said I responded well to chemo before so hopefully will again, especially as there has been a 2 year break.

I have loads of questions for my CNS who is calling on Monday, I'm not sure whether they will recommend me starting before the break to get one under my belt or leave it til I get back, she said its a 2-3 week waiting list anyway so going away will prob just delay it for an extra week.

The choices of chemo are hit it hard with folforinox or have an easier combo of folfiri for better quality of life.  I'm still undecided which way to go.  

I also want to ask about the cetux rules, the Onc said I can't have it for progression but this isn't progression, I came off it 2 years ago for my liver resection and have since had 2 pelvic extenterations and no further chemo and the recurrence is in my lymph nodes which it wasn't before.  It was the drug that gave me the best shrinkage so I would be keen to add that in with folfiri.

Such a lot to take in.  My sobriety took a hit last night, lol!!

Michelle 

Will have a look to see the Nice guidelines  on Cetuximab . I know the six week rule for England was dropped but not sure about progression .

Have you seen anyone mentioning using drugs on compassionate grounds by approaching the pharmaceutical  directly ? I heard it mentioned in the past but not recently .

I am having mum round this afternoon so will get a chance to look at the guidelines . Always better to argue referencing them .

No wonder you needed a wee medicinal drink . However you and mum turn things around . I totally believe perseverance has brought you both this far and firmly into the grounds of treating this like a chronic condition . You have not had chemo for years .

However I hear what you are saying about appearance and I wish it was different for you .

One thing about using Cetuximab over the long hall the side effects seem to go right down to manageable . Especially the skin . More like sandpaper and I think if mum was younger with a bit more dedication and attention she could be completely on top of it . For now we greet her with a hello and also cream all over her wee face .

You are stabilising and as you said a different oncologist is tough . We hold onto mum’s with both hands . Is your coming back ?

Top responder , add in the targeted radiology and you will be back in gear !

The side effects we are here to support you through . We are your back up team .

Have a better day today ,

Court x 

Thank you court , if you come across the guidelines for cetux I would really appreciate it, the skin was an issue for me last time but hopefully this time round I could manage it better.  I found it a lot easier to tolerate than oxi.  Sounds like your Mum is doing well on it?  Still stable hopefully?

Mine is on a sabbatical and due back in Jan so I'm hoping I will be transferred back to her, she knows me well and is my best advocate in the MDT meetings.  This one seemed so negative and has already written me off.  My lovely CNS is calling me on Monday, she's known me from the beginning and I can ask her anything so I'm hoping she'll pep me up a bit.

I've booked my flu and covid jabs so am getting prepared.  After this weekend of wallowing I'm hoping I'll be back on form.

Thanks again x

https://www.nice.org.uk/guidance/ta439/resources/cetuximab-and-panitumumab-for-previously-untreated-metastatic-colorectal-cancer-pdf-82604732556229

www.uhs.nhs.uk/.../Cetuximab-Encorafenib.pdf

https://www.england.nhs.uk/long-read/continuation-of-funding-for-sact-following-a-break-in-treatment/
This last one is probably the most concise.

You might want to phone the Macmillan helpline to go through the details and see how you could approach it .

Can your oncologist seek a special circumstances in  anticipation that you will respond and the length of the time between treatments? Worth asking . 

It can be used for people who have failed treatment as a single agent . This might be worthwhile paying close attention to if you get to use it again  but it does not mention using it for a second time . Even in a maintenance setting if they ever want to stop it for a short period of time they have to fill in paper work . You might want to ensure that happens and ask a bit more about the guidelines so you can take a break in the future but still have it available.

Also can you use a different targeted drug if Cetuximab is not a possibility. Two seem to be referenced .

Either way I would be worthwhile printing out the last link and taking it in with you and going through the criteria together .

You are also entitled to that second opinion so keep that up your sleeve too !

I will keep looking ,

Court 

This part is relevant I would think , certainly worth asking about .

Court x 

The other point might be worthwhile asking if you are on first or second line treatment .

Court 

This is brilliant court , thank you so much, I'm grateful to have you in my corner.  Some great points to raise and questions, really appreciate this. x