Help progressed to Brain Mets and fighting for the right treatment

Hi Illimae,

Thank you for coming straight back to me. I know that you are not without your own problems. I always knew the risk of progression but it was a shock when in happened. I will start TDXd (Enhertu) a week on Monday but am scared that it will not shrink the tumour quickly enough. Then I might need surgery.

I have asked for a second opinion about Gamma Knife, which I hope to get an answer to this coming Thursday. Gamma Knife sounds scary but I understand it’s normally done first and they are saying they will revisit in 2 months. It seems that now Enhertu can be given at the same time. I was told that Gamma knife could leave me unable to speak or write. I have a gut feeling my best chance is being denied.

The sticking point seems to be the size of the main tumour at 3 cm, and how long waiting for treatment. Will keep everyone posted. I have decided to push for Gamma as well, but might be denied.

Thank you so much

Well a Nurse got back to me by phone to tell me the Second opinion from the Royal Marsden was in agreement with UCLH that Enhertu was the way to go at this stage. Like Illimae said a 3cm tumor is big. I also spoke with my Oncologist who is a trials doctor and all about the drugs. She said why fry your brain when you don’t have too?

I had been told to expect Gamma Knife and had prepared myself, so I felt a lifeline was being denied. I felt better when the second opinion was the same and I didn’t have to make a choice.

I guess we will look again in two months time, the first Enhertu treatment will start on Monday.

@illimae my MRI is due on 22nd June, but spoke to my Oncologist face to face for the first time since Brain mets diagnosis. It did not go well. I guess I was looking for reassurance and a plan going forward. She spent most of her time telling me that I was attending one of the leading Hospitals in the Country and I should put my trust in the decisions they make. I requested a second opinion when Brain mets were first diagnosed, also speaking to the head Neurologist through his secretary.

There were one or two things I was told by a different Oncologist that led me to want to go over certain things. Firstly to expect Gamma knife. Then they were surprised I was going straight to TDXd as Gamma knife was normally done first. They then said it would be revisited in two month, after the MRI on 22nd June.

Well apparently my Oncologist would not be expecting a revisit until six months were up, I would have to be showing stable Brain Mets. Then there would have to be a washout period which could cause problems. Have I got things wrong by wanting to know everything? I was thinking that my best chance would be to have Gamma knife along side TDXd, once the “crocodile closest to the boat gets zapped”. My Oncologist clearly thinks differently.

@illimae sorry I have not made things clear. They are doing an MRI exactly 8 weeks after commencing Enhurtu. This will be on 22nd June. I was hoping if there was a good response, that there would be another multidisciplinary meeting of the Neurosurgeons. I have just had my 3rd infusion of Enhurtu. Treatment will continue, but Gamma Knife would not be reconsidered for six months. To gauge the effectiveness (give Enhurtu a full chance to work). The Oncologist also mentioned a need for a washout period which could lead to further problems. Not sure how often MRI frequency will be going forward.

In your experience would you have been happy to have tried Enhurtu straight away? Leaving Gamma Knife further down the line. How are you by the way, if you don’t mind me asking.

@illimae great news about your brain MRI results.

@threetree thank you for your support. I could ask to change to another Oncologist, but I do value her expertise. I think it’s her way of remaining suitably detached. My Oncologist does favour trials drugs over local therapy. This time round though I feel like I have been put on an unofficial cross trial!

@illimae Well I had my meeting on Monday with a highly experienced and wonderful Neurosurgeon, who took time to explain the comparison between my last two scans. I have responded well to Enhurtu, so much so that I have been invited to have Gamma Knife treatment, and have been booked in for next Tuesday.
What I had not been told in previous Oncology meetings, was just how much overall Tumour burden there was. The main tumour has shrunk by possibly up to half, they can see two possibly three (third one might not be there) other tumours that are smaller and have also shrunk in size.

Was worried about the wash out period required, afraid my Oncologist would insist on it, but that objection has been removed. Of course it’s my decision to go ahead. They have not sugarcoated the initial pain with regards to the needles and frame fitting. They even invited me to see the frame and the room. I thought of you and how you really did not like the experience.

I am trying to prepare the best I can mentally. I have told myself if I can just get through the initial frame fitting, things will be ok. I am thinking about taking Panadol 20 minutes before the frame fitting. I will take whatever else they offer me. I think it’s my best chance to fight this with both approaches. Please let me know your thoughts.

I am worried that Enhertu could stop working in the future. I could have waited to see if I had a complete response at the end of six months, but the chances of that happening are low. My age is against me. I just wish my Oncologist was more open with me. There was no collaboration.

Are you worried about necrosis from previous Gamma Knife treatments? How are they monitored?

@illimae I have been looking at local treatment side by side with Enhurtu, and here in the UK under the NHS I felt when given the opportunity, it just seemed my best chance at this stage. I discussed it with my son who is a scientist and worked previously for Cancer research. I had been invited by one of two centres of excellence in the Country, after being referred by the London hospital I attend for treatment. It’s a postcode lottery living in the UK where treatment is concerned. I had already signed the consent form, and 2 days ago, went ahead with the procedure. I believe in fighting fire with fire. I had 7 tumours treated in total. The biggest problem was waiting for Pharmacy, the delay meant a 3 1/2 hour drive home, normally takes 2🤣🤣🤣. I should have gone on the train but would have had to climb a lot of stairs on the underground. I did not know how I would react to the treatment.

Three of the tumours could only be seen on the planner scan, and were easily treated at the same time. I had treatment lasting 2 hours. I listened to the local radio to pass the time. It’s early days but was told that I responded to the treatment very well. They will do an MRI in the beginning of September then every 3 months after that. Of course I will not know if in three to six months time the tumours were to disappear how much is down to Gamma or Enhurtu. But I would be very happy if that happens. I will have to find patience as well as hope.

The head frame may have changed since you had the procedure done. The initial injections did hurt, but only briefly. One injection hurt more and took the pressure off of me concentrating on the other three 🤣🤣🤣. I took my own Panadol just before the fitting of the frame, so maybe that helped? The Neurosurgeon was so positive, it has given me hope.

I have been through much worse. Like the time I had revision surgery after Mastectomy to correct my scar. It was done under local anaesthetic, the Surgeon was telling his assistant that the Scalpel had to be really sharp. He also described how the anaesthetic could only be given on a shallow depth of skin. The sensation of the scalpel pulling the skin was not good. I had to tell the Surgeon if I could start to feel anything, and he would top up the anaesthetic. It was the longest 35 minutes of my life, not to be recommended. The surgeon did a good job, but next time I would want knocking out. By the way, I had to fight for the Mastectomy at stage 4 and whilst on trial.

I have found your advice invaluable, and will update as this drama unfolds.

Only side effects so far have been slight sickness on two late evenings. Last night I took one ondansetron and it worked. Next week on Tuesday will be my fifth infusion of Enhurtu (second on lower dose), so will not know if I feel sick what it’s down to.