Herceptin Day....

Here we are driving to Noble's hospital. The sun is blazing through the windscreen of my little black 1999 Renault Clio and the morning temperature was already pushing 17 warm degrees. Having spoken to a couple of alternative/complementary cancer practitioners during the week Amanda finally decided to give Herceptin a crack. There comes a point where things feel so rough everything bar chemotherapy is worth a go. If you read this blog regularly you'll no doubt have already read about Herceptin in the previous posts, so I pray Amanda falls in to the small percentage of women that Herceptin helps. I pray even more she suffers no side effects. She has enough on her plate as it is..... Recently having enough on her plate has also been a problem. She has been
suffering nausea, with a loss of appetite, and has been limited to eating melon, papaya and fresh fig.... Her rotund abdomen stretched so tight that it actually shone. Our GP suggested the abdomen was scanned with an ultrasound a few weeks ago to see if fluid was causing the problem. The ultrasound showed no fluid at the time. They thought it was just gas caused by the medication, though recently her feet had been swelling to the size of inflated rubber gloves, which suggested there could be fluid at play.

We arrived on tuesday morning at 10am for the Herceptin infusion, the nurse on the oncology ward was Markie, a flame haired little lady who whilst we were staying at the hospice worked the night shifts. It was nice to see a friendly face. The treatment chair may as well have been Mount Everest, even I would have struggled to simply sit in it. They have new dentist surgery style chairs, but forgot to purchase small ladders to allow the ladies to climb up in to them. Once I'd swept the snow from the high altitude shoulders of the chair clearing the way for a struggling Amanda to get in to position she was ready. Her neck and shoulders had been very painful, plus the thought of having to sit for 6 hours whilst Herceptin was being infused in to her veins was causing a little extra anxiety, no doubt the exact same anxiety that had kept me awake the night before. She took her breakthrough medication and a muscle relaxant to soften things up. Within 20 minutes she was drifting in and out of consciousness sat a top the mightily dappled blue Herceptin throne. Markie tapped her blood and attached her to a saline drip ahead of the infusion.

There was concern about her shiny, pregnant looking belly. It wasn't me I assured the nurse and doctor!!! Honest! The swollen feet, nausea, loss of appetite and breathing problems were being linked to her rotund pot. The doctor decided upon another ultrasound. This time there was fluid.

The Herceptin infusion was put on hold. They wanted to tap Amanda's abdomen to remove the excess fluid. This would hopefully take the pressure from her stomach and colon returning her appetite and easing the nausea. It should also ease the pressure on her diaphragm and lower lungs making breathing more comfortable once again. The 'tapping' would take place later in the afternoon on ward 6. I hoped this would make her feel much much better. The Herceptin can wait for another day....

Amanda's sister Jane continued to rub organic coconut oil in to her dry feet and legs, as she drifted in and out of a dream wake state. I wish Jane wouldn't be so selfish. Amanda's legs and feet were dry too! Only kidding folks!

It was almost 4pm when the procedure started. Amanda was not exactly cohersed in to signing the consent form for the mini operation, but certainly wasn't in any fit state to be signing off her own procedure, her eyes lolling and rolling between heavy lids. Jane looked at me as if to say, 'That's not right is it?'.

'Super Nurse' (as he was affectionately known by one of the younger female nurses on ward 6) Graham, gowned up and a young doctor called Pete who asked to observe the procedure assisted. Within 15 minutes the tap was in place, no organs damaged, all had gone well. 10 minutes later almost a litre of albumen coloured fluid had drained in to a plastic sealed bag hanging from a blue plastic hanger hooked on the bed side rail. Half an hour later almost 2 litres had been drained. They rested her for an hour then hooked her up again for almost another litre to drain off. Amanda was tipped slightly on to her side to allow the fluid to make it's way down to her left side where the drain was positioned. Ob's were taken every 15 minutes during the first couple of hours, reducing to every hour later on, up until midnight. She was still very drowsy, the breakthrough medication and the exhaustion of the day taking it's toll. She drifted again. Jane, Colleen and Linda head off. I lie my head on the side of the bed and hold her hand. I'm tired. I didn't sleep the night before, anxious about how Amanda would cope with the day's events. That'll teach me not to be in the present. How things can change so quickly. Why did I worry about something that' wasn't actually happening. We all do it, but we'd be kinder to ourselves if we didn't. I depart the ward at 9.25pm, visiting hours finish at 8pm, but the ward nurses seem to be understanding of our situation. I'm sure the nurses are totally unaware of Amanda's original problems, ie. Tumours along the spine and neck, on occasion having to inform them due to excess head tossing and dragging up the bed and pillow moving etc. I make it clear with the nurse caring for Amanda that night she must ensure Amanda is lay flat so as not to 'crick' her already painful neck. Make sure her head is supported with one of her soft cushty bean bags. I fuss some more, kiss her head (not the nurse), nose and mouth then slip around the curtain. I turn around and go back for another kiss and fuss, then head home. Amanda's mum Colleen has been kind enough to prepare some freshly caught lobsters for our salad. Jane and I had been in the hospital all day, surviving on coffee (and two little biscuit sachets for me!). We were both tired and hungry. Thanks Coll.

It's 3.30am.... sleep is proving evasive. I decide to get up and head to Peel. I catch 5 mackerel before sun rise, then aim to take some pictures of dawn breaking over Peel. I walk up the hill behind the castle then realise my camera has no battery in it. I saunter back down as pastel hues fill the sky..... I charged all my camera batteries two days before and had popped them in a tupperware in preparation for my next photo outing, but they were no where to be seen. I walk back up the hill with my compact camera. I wasn't worried about capturing dawn forever, I sat down on one of the memorial benches and watched the clouds light up pink and orange from below. A beautiful morning. I couldn't resist firing off a few shots, very relaxed shots. I wasn't aiming to create a master piece, just to capture some colours. You can see it on my Facebook page, Mark Boyd Photography.
It was 5.40am. I walked back down to the car and headed home to prepare breakfast for Amanda. I wanted to be at the hospital for 7.30am with a fresh organic breakfast for her.

Amanda had slept well, though her tummy was still swollen, but not to bursting point. She was more comfortable. Due to Amanda's calcium levels still being a tad raised they decided to flood her with some IV fluids, a sac of the clear stuff. To sustain the lower level they added zoldronic acid, this will be followed by a 4 to 5 weekly injection of Zometa (they then have to watch for calcium levels falling too low, plus any renal impairment or teeth problems)... This will not be a long term thing, as having read other studies using Vitamin K, D and Calcium, an almost identical result can be achieved with none of the potential nasty side affects of Zometa. Many women get no visible side affects, but long term they are discovering that Zometa not only stops the old, unhealthy bone cells being removed, it begins to have an affect on the cells that make new bone as well. They eventually just stop.... Which leaves the ladies taking Zometa in a worse position long term than they may have been using natural vitamin therapy. This is nearly always the case with pharmaceutical drugs. The human body's intuitive way of sustaining homeostasis begins to compensate for what ever synthesised (lab made) product is being introduced, this obviously has a derogatory knock on affect on the body.

The curtains would swoosh open as doctors and nurses drifted in and out throughout the day, information being conveyed in bits and pieces to the other links in the chain, such as oncology to ward 6, ward 6 to radiography. This was none more apparent than when the radiology department x-rayed Amanda's chest and left shoulder. She was apparently tossed about with little consideration for her damaged cervical spine, I doubt they were even aware of it, and Amanda was too sedated to tell them otherwise. She was in tears on her return. The x-ray showed nothing abnormal. The lungs were still healthy after their weeks of bulging belly compression and her shoulder showed no bone damage, which was great news. Though now she was in more pain than before!

A strange thing also happened yesterday. Jackie Readshaw the head 'Chemotherapy Nurse', came in for a chat. She asked whether Amanda really wanted to bother doing Herceptin, “as without the chemotherapy it really doesn't have much of an affect.” This seemed crazy to me. They both do totally different things. Chemotherapy drugs in general kills all cells involved at a certain stage of mitosis (cell division) whilst Herceptin works on the 'over expression' of the HER2 gene through blocking protein receptors on the surface of cells. There have been studies that suggest when used in combination there can be slightly better results, but then there is the 'before chemotherapy after chemotherapy debate'. But to suggest that Herceptin doesn't do much on it's own suggests that Herceptin is indeed useless as a treatment for HER2 positive cancer, and also that Jackie Readshaw doesn't do much reading about the drugs she is administering to her long suffering breast cancer patients. I think if you work in an industry and your passionate about your job, you should know all there is to know, and then you should aim to keep up to date about new developments or studies. To use a a fine quip, 'keep a-breast of things'. You don't have to know about everything, but know your own corner and know it well. Off the cuff comments like Jackie made are crazy. What if the Herceptin could have helped Amanda, but on Jackie's comment she didn't bother? What if on Jackie's suggestion chemotherapy killed Amanda? I don't think she realises how much weight her words could have on the lives of women suffering breast cancer...... Who knows how many women have been affected through short ill considered sentences, women who have little knowledge of Biology and biochemistry of the body and the cancer drugs they are being advised to take as their best course of treatment? How many have heard a short sentence from a nurse that has changed their life for the worse and not the better. Frightening really. One thing I can say for certain is that with all due respect Jackie does not know how any of the cancer drugs currently used as treatments in the UK will affect Amanda's body. Not even the oncologists can tell you. I'm ever so slightly annoyed.

'The FDA (Food and Drugs Administration) originally approved Herceptin to treat breast cancer in September 1998. Approval was limited to use in patients with metastatic breast cancer who had tumours that were HER2-positive, and there were strict rules regarding how Herceptin could be administered. The drug could only be given in combination with a specific chemotherapy drug (paclitaxel) in women who had not previously received chemotherapy for metastatic breast cancer, or as a stand-alone treatment for women who had received prior chemotherapy (U.S. Food and Drug Administration, 2010). In November 2006, FDA approval was expanded beyond the metastatic setting to include treatment of HER-2 positive breast cancer in combination with chemotherapy following primary early stage breast cancer (often referred to as the adjuvant setting). Similar to the initial approval, there were strict controls regarding how Herceptin could be administered. Only a chemotherapy regimen containing specific agents (doxorubicin, cyclophosphamide, and paclitaxel) could be used. Furthermore, only patients with breast cancer that involved the lymph nodes were eligible to receive Herceptin as part of their treatment regimen. In January 2008, FDA approval was revised to include Herceptin for use as stand-alone treatment (without chemotherapy). ('So Jackie Readshaw also disagrees with much of what the FDA has to say about their approved cancer treatments?!') In the metastatic setting, Herceptin has been used in combination with chemotherapy as well as a stand-alone therapy (sometimes called monotherapy). Both methods have demonstrated clinical benefit (Cobleigh, 1999; Slamon, 2001; Vogel, 2002). However, there are concerns about serious heart problems that have occurred in some clinical trials when certain chemotherapy drugs and Herceptin are administered at the same time. Research that confirms who is at risk of such adverse outcomes needs to be completed.

Herceptin treatment can cause reduced heart function and congestive heart failure. The risk is highest when Herceptin is taken in combination with a certain type of chemotherapy (anthracyclines), according to the latest results of the BCIRG 006, an international trial of combination treatment regimens for HER2-postive breast cancer (Slamon, 2009).'

Bar my sentence in the middle of the above paragraph regarding Jackie's audacious comment, all is taken from www.breastcancerdeadline2020.org. All the statements are taken from clinical trials and long term studies of Herceptin.

Amanda was discharged this morning. I put her to bed at 10.45am. She is still fast asleep beside me whilst I type this update at 4pm. When she wakes I hope her pain has subsided to a more copable level.

An interesting thing happened during the last couple of blood tests. Her gamma glutamyl transferase (a liver enzyme) has been gently spiralling out of control, but during the past two blood tests, it's fallen.... Not enough.... But it's fallen. Is it all the positive energy coming from her friends and family? Is it the Protocel finally doing something? Is the other supplements and alternative treatments? Is it just a blip? Who knows..... But keep it coming everyone.

Thanks so much for your kind comments on Facebook on Tuesday morning, they were very touching. I will read them to Amanda tonight.... My eyes will no doubt leak a little as I read them....

Big love to you all.

Mark.