HER2 Support Group Forums - Poppy popping in to say Hi too

Ten years ago with my wife Poppy desperately ill in hospital I issued a cry for help on this forum. Two months after Gamma Knife treatment for a brain tumour she had symptoms of Pneumonia and Sepsis and I thought it could be the 1 in 500 reaction to Lapatinib (Tykerb). Much later it was generally agreed that this was probably the case. This is a good news story, but let me go back to the beginning.

In 2011 aged 62 she was diagnosed with Stage 3 Breast Cancer which was quickly revised to Stage 4 when mets were found in the lungs and (possibly) the liver, HER2+. After mastectomy and 6 cycles of Chemo she was put onto Herceptin and responded well. By the second summer we were beginning to feel that we could live with this regime. It wasn't quite like life before, but it was OK.

All this changed in August 2013 when her foot suddenly froze momentarily mid step when walking. The 3 weeks later she was not feeling well with a mild headache and saying "I just wish someone could tell me what is wrong with me". An hour on Google came up with an answer - a brain tumour in the Cerebellum. This forum came up with the confirmation - 30% of stage 4 Breast Cancers result in Brain Tumours. Another hour gave an overview of possible treatments.

Next morning we set off early and phoned ahead for an emergency appointment. The Oncologist agreed with Google and ten minutes later she was on a Dexamethasone drip. Two long nights of research determined that whole brain radiotherapy was a bad choice and we needed to get Gamma Knife. I advised her to refuse to sign the consent form and we pushed for Gamma Knife. By an extrordinary chance, a new Gamma knife facility was just being installed 20 miles away but we had to wait for it to be commissioned. She was patient No 7 and was quickly back on form.

I had noticed that a small group of people who had gone through all this were still posting on this forum ten years later and I tried to work out from their histories what the common factor was. It soon became clear that there was none but then I realised I was looking for the wrong thing. What they did have in common was that they had all tried every conceivable treatment with any scientific basis, and if it didn't work they tried something else.

Meanwhile it was decided that Herceptin had failed and she should be switched to Lapatinib (Tykerb)/Capecetabine (Xeloda). I didn't really agree with the argument since the Herceptin molecule is too big to get throught the blood brain barrier so it could hardly be expected to work in the brain. On the other hand it fitted in with my new approach. Because the Dexamethasone she had been on for the tumour has to be ramped down over several weeks, she started to take this before it had been stopped and within a day of the final dose of Dexamethsone she was breathing too fast and seemed to have pnenmonia. Two days of antibiotics had no effect and she became very weak. When the paramedic took her Blood Oxygen level it was 54%. She spent the next ten days on Oxygen and being treated for every possible cause, initially pressure breathing 100% Oxygen at 45 breaths a minute, which is when I appealed for help. I have pressure breathed Oxygen for avaiation training and believe me, this was an astonishing physical feat.

Three weeks later she was home on a Zimmer frame and slowly began the haul back to health. Initially, CT scan showed only a white fog over 90% of the lungs, but after 6 months the fog cleared and revealed a minor miracle. The secondaries in the lungs had disappeared and the indications in the liver were deemed not relevant - NED in the body. Ten years on this has not changed.

Two years later in 2015 the brain tumour regrew and was again zapped with Gamma Knife (along with a very small new one) and then again in 2017. This played havoc with driving licenses and holiday planning but did not much affect daily life. When it reappeaed again in 2019, Gamma Knife could not be used due to the risk of Necrosis, but a operation to remove it was offered. This proved much less fearsome than we had imagined and after a 5 hour operation she was sitting up in bed reading a book in recovery, much to everyone's surprise including the surgeon.

Meanwhile she had been on Herceptin since the Laptinib incident, with various breaks due to low heart function. In 2018 she was adament that she did not need it and after some discussion it was discontinued.

Now in 2023, she is an active 74 year old, doing all the things that septuagenarians do and more, with no significant restrictions and has taken no drugs since 2018. 6 monthly CT since 2013 and MRI scans since 2019 have all come back negative, the latest set this week. There is some residual damage to the Cerebellum which controls fine motor function of the feet which calls for special care particularly in low light conditions, but this is a minor inconvenience and a small price to pay. We notice some of our friends are catching up anyway so soon it will be normal. We know it may all change in an instant, but there can be no doubt that those decisions taken under enormous pressure ten years ago, together with a large slice of luck, have already been validated.

Gamma Knife for Breast Cancer brain tumour sufferers is now the standard treatment at our local hospital. Before I thumped the table, it was unheard of. Poppy's sister was chief radiographer at a major New Zealand hospital and was stunned by the result. On the basis of this she instituted a major shake up of treatment in NZ which I hope has endured. I have a completely unproven theory that because there are so many genetic factors which influence susceptibility to cancers (around 100 for Breast cancer), to some extent every case is a slightly different version of the disease and may respond in a different way to particular drugs. It would at least help to understand why those who try everything somethimes do find something that works for them. It might also explain why so many promising drugs fail at third stage trials to meet the success rates required. But that's just my thoughts.

There are no simple answers in this business, but I hope this long story may give someone the spark that helps them through. Poppy has always had a positive attitude to the whole thing and I realised eventually that this was because she externalised it. She saw it all from afar and worried not about herself but about how her situation would affect others. Right back at the beginning, she said that her only sadness was that she would never meet her grandchildren. Twelve years from diagnosis, she now has five across two continents and she knows them all.

Thak you Christine for what was to me a vital resource,

William