Hello Treefield and welcome to the Cancer Chat community.

I've had a look through the forum and found a discussion about Enhertu started by a member called HopeSprings a couple of days ago.

If you'd like to find out more about Enhertu, our team of cancer nurses may be able to help. You can talk to them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m and they will do all they can to answer your questions and give you the information you are seeking at this time.

Kind regards,

Steph, Cancer Chat Moderator

Many thanks Steph. I will contact HopeSprings. An option I may have is to be referred to The Determine Trial run by Cancer Research and two hospitals for rare cancers. I cant find any discussion about this trial in the forum using the search tool. Are you aware of any? Sue 

Hello Treefield

I've had a look through the forum and I can't see any members who have mentioned the DETERMINE trial but we do have some information on our website here that may be of help. 

If it would help to talk things through with one of our nurses, do give them a call. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Treefield I hope you don’t mind but I was directed to your chat by Jolamine, and I was wondering if there was anything I could help you with as I’m on the drug Enhertu albeit I just started. Please feel free to ask any questions you like and I will endeavour to either answer or at least ask my oncologist for you. Kindest regards Hopesprings. X 

Hi Hopesprings,

Thankyou so much for getting in touch.

I am so sorry to read of your cancer journey to date. It sounds very tough going as does your treatment with Enhertu.

I have Stage 4  HER 2 lung cancer for which there are very few treatment options. My oncologist is considering referring me to The Determine trial run by cancer research, and two hospitals. If accepted I would be given Herceptin and Pertuzumab used to treat HER 2 breast cancer but not licensed to treat HER 2 lung cancer. I wondered if you have HER 2 breast cancer and whether you were treated with these two drugs and found them helpful?

The most effective treatment for my condition would appear to be Enhertu. Its licenced for use in the USA , EU China etc but not yet approved for use in this country for HER 2 lung cancer. Its use will be considered in July and a decision reached by the end of the year but my cancer is aggressive and this may be too late.  My only other option is to try to source Enhertu privately but my understanding is that each treatment would cost somewhere in the region of £10,000 every 3 weeks which is pretty prohibitive and upto now I haven't found anywhere where I could be treated with Enhertu. My oncologist is excellent but this is a rare lung cancer mutation and she is very limited in what she can prescribe and she cannot prescribe Enhertu until its approved for use for my type of cancer.

I live near Bridport, Dorset so a bit away from the main hospitals. I did approach one of the hospitals that are involved with the trial but they would not offer Enhertu unless I had private medical insurance so I feel a bit stuck.

If you have any thoughts or information that would be really helpful.  I'm also really interested in how you're finding treatment with Enhertu? I was quite worried by the potentially very serious side effects and hair loss, though its good that a cold cap has helped to prevent this. 

Kindest regards 

Treefield x

Hi Treefield 

Thank you for your kind words. You truly are a fighter! Long may you succeed in that fight. 
I don’t know my staging I’m too afraid to ask, but I’m Breast her2+  pr+ er +   so in a way pretty lucky (if you can call it that,) meaning their is still plenty in the medicine chest to fight my particular illness with, thank god! Although, none of them easy options! 
i was diagnosed first back in 2011 and have had eight repeated occurrences to date. The metastasises found in 2015 to the right lung. Since then on one recurrence I even tried the new Metastatic radiotherapy treatment, which is a fantastic beam far more directected than regular radiotherapy, and it did manage to zap a tumour which was next to my heart in the right lung, even stopped the blood I was coughing up, but, unfortunately it did fail to stop anymore tumours  reappearing around a different area in the right lung. Swings and roundabouts! 
Being aware of my bodily changes ie coughing, weight change, and asking for scans when I know something to be wrong, has kept me alive! I never doubt myself, what’s the worse thing! Ok it costs but in human reassurance it is priceless, and I’ve only been wrong once in eight tumours! That’s enough about me! I’m sure I’ve waffled on enough. 
The drug you mention about  (Herceptin & pertuzemab or to me I know it as Phesgo) , which I had it as a subcut injection, is it the same drug do you think? Worth an ask? It gave me eight years of being able to fight cancer. With a couple of surgical interventions for very small tumours reappearing in my right lung. (Stubborn lung.) I will keep everything crossed you are successful in the trial and pray it gives you the results you need! This country is so slow to grant fantastic new drugs licenses because of cost! Compared to the amount of money the country wastes on otherwise mad projects and doomed schemes, criminal! 
Just for your info, if it helps any? My oncologist is a research professor who helped develop Phesgo if that info helps any? I have allot of faith in him, and have always been with him from the beginning of my cancer journey. 
I believe he does nhs work out of guys if that’s any help? 
I can’t comment much on Enhertu yet, it’s only my fourth treatment but the steroids help alittle , it gives me allot of tummy upset and bowel problems, but I think that’s just me getting use to it! I’m having the cold cap atm as my oncologist has told me I will lose my hair. I think that’s because I’m on it until the next recurrence or it stops working. ( I’m hoping for five years, but I’m a total optimist! ) I’ve found a lovely wig, so I’m not that bothered now. 
im truly hoping and praying you get the results your looking for if I haven’t answered or can answer any more questions please don’t hesitate to ask!  Chat soon. Xx 

Hi Treefield and Hopesprings , 

Just a quick post to let you know that in line with our terms and conditions, individual healthcare providers and members of staff cannot be named on the forum, so if you would like to discuss this further, we would recommend using private messaging.

These guides we have about how to use private messaging and add friends should help you get started but if you encounter any problems, just let us know so we can help.

Kind regards,

Steph, Cancer Chat Moderator

Hi Hopesprings

Unfortunately my previous message has breached guidelines. I am new to this site and its protocols. I have requested you as a friend but please don't feel any obligation to reciprocate.

I was wondering how things are going for you and whether you are finding Enhertu any easier to cope with? .Are you still struggling with the side effects and when will you know if its working well for you?  

Take care and kindest regards 

Treefield