Tuesday 4th February, 2014
On 25th January, when I finally got up to date with this blog, I wrote “So, the blog posts will be up to date and live from now on”. I then posted on 28th January, with shitty news (about the positive PET scan), and on 6th February, with some truthful news (knowing the PET scan would be positive). Then, as you know, nothing. So I now find myself four months behind on writing about my adventure. I will now try to catch up as quickly as I can, which will be difficult given how much has happened and how much I write. As you read the posts that follow, I am sure you will understand why I haven’t written for a while.
I last wrote about receiving the news that my PET scan following 6 months of chemotherapy didn’t show the result we had all been hoping for, and I still had cancer. At that point, I didn’t know exactly what that meant in terms of further treatment required, as I didn’t see my haematologist until a week later.
My appointment with my haematologist was on Tuesday 4th February, one week after the PET scan. You may recall that the last time I went to see a haematologist after a PET scan, someone in the car park gave me their parking ticket which still had time left on it and that was one of three good things that happened that day. Well on this day, I was again given a parking ticket with time left on it, but this time I knew it wasn’t going to be one of three good things to happen as I was not going inside to get good news. Unless of course my radiologist friend had looked at the wrong PET scan and I really was in remission. Now that would have been good news.
My appointment with my haematologist was actually pretty brief. I had spent the whole week thinking of questions I wanted to ask him but I didn’t write them down. My main goal had been to see if I could get any sympathy from him, because he’s a bit of a hard arse. I was going to ask for it, but I forgot. When he called me in, I quickly reassured him that I already knew the results of the PET scan so he didn’t have to break shocking news to me, not that I think it would have been difficult for him. Cancer doctors are pretty used to it I think. He said “that’s a bit of a bummer isn’t it?” which I thought was putting it nicely. Jenni had asked me if I thought he would be shocked. I said I thought he’d be surprised but not shocked. So I asked him if he was surprised and his response was that “we are always surprised when patients don’t behave in Hodgkin’s disease”. Well I think I behaved, it was the stupid cancer that didn’t.
He went on to say that looking back, the one thing that was not “super dooper” was that the re-staging PET scan after 4 hits of chemo, although showing “improvement plus plus”, wasn’t negative. You might recall I asked him about this after the scan because he told me from the outset he expected that scan to be negative. He said that while it was never going to influence anything he did at the time, it always remained a question mark for him. He didn’t tell me that when I asked him at the time. He was very non-committal, as he is. I wonder if he had have told me about this question mark for him, would I have pushed him to change my chemo regime? Even if he did change it, who knows if it would have changed the outcome. I might have just had the pleasure of more extreme side effects and still had cancer at the end of it.
He explained the most recent PET scan showed low bulk disease, all above the diaphragm but in multiple sites so it was not amenable to treatment with radiotherapy, which is sometimes considered if there is just one troublesome spot.
“So, you get to score yourself some stronger therapy”, he said. I asked what that meant. Was he talking about BEACOPP (the one the German’s tend to use instead of ABVD) or a stem cell transplant? He said the first step would be some ‘salvage chemotherapy’ which would be upper grade in intensity compared to the ABVD I had just had. He had constantly told me how well tolerated ABVD is and it constantly annoyed me because I hated it, although in hindsight I probably did tolerate it well. “The next step is definitely tougher” he said. Coming from him it must be bloody tough. He explained that following the salvage chemotherapy, the response to it would be assessed and then it would be followed by an autologous stem cell transplant.
I wanted a name for this chemo I would be having but he couldn’t tell me because, as he informed me at that point, he wouldn’t be delivering it. He had referred me to the doctor I had seen to get the results of my re-staging PET scan (when he was on holidays), the one who I thought I had been overly positive, as she also worked at a larger hospital in the city where this further treatment would take place. He asked if I was happy to be referred there. I said I didn’t really have a preference but I just wanted to know that no matter where I was referred, the same treatment would be recommended. He said everyone would recommend salvage chemotherapy followed by an autologous stem cell transplant, but the salvage chemotherapy regimes might differ slightly.
I didn’t know a lot about stem cell transplants at that stage; I just knew there were two types – autologous (using your own stem cells) and allogeneic (using stem cells from a donor).
I asked him what the success rate of treatment was now given that I hadn’t responded to the initial chemotherapy. He said we were still looking at curative treatment, which was nice to hear, “we had just hoped it would be a bit easier”. Aint that the truth.
I left that appointment still feeling OK about things, probably because the word cure had been used. It’s a nice word to hear. I then sat in the waiting room, sent a few texts to people to let them know I’d have to see another doctor to find out what was going to happen next, and waited to see this doctor, who I had previously thought was too positive. That was about to change. As I waited and saw her come out of her room to call in other patients, I noticed that she was pregnant. I joked with cousin Sonya that I thought that was a bit inconsiderate of her as it wouldn’t do much for the continuity of my care!
I was called into her room and the conversation started with her saying my PET scan didn’t look as good as the last one. “That’s a bit shit!” she said. Talking my language. She explained that I would require “salvage chemotherapy”, followed by stem cell collection, followed by an autologous stem cell transplant (using my own stem cells) and that they could only proceed with the transplant if I responded to the salvage chemotherapy (50% improvement or better on PET scan). She further explained that the stem cell transplant is a BIG dose of chemotherapy which wipes out my bone marrow and would take me months and months to recover from. Hence, my stem cells would be collected prior to the big dose of chemotherapy and then put back in after the chemotherapy so my bone marrow could regrow and I could recover from the huge dose of chemotherapy in weeks as opposed to months.
Take home message number 1: An autologous stem cell transplant is actually a MASSIVE dose of chemotherapy! The stem cell transplant bit is just managing a side effect of that massive dose of chemo (wiping out the bone marrow).
She said I would need to be in hospital for a few weeks to manage side effects of the big dose of chemotherapy. I asked at that point why a bone marrow transplant isn’t done as first line treatment. I would find out the answer to that question myself in a few months! Her answer was that it is very intense and that most people with my type of lymphoma respond well to the initial chemotherapy that I had (ABVD) and go into remission and stay in remission. Not me.
She said that when I was initially diagnosed, I had a 60-70% chance of going into remission with ABVD (I’d been given better odds than that but that’s irrelevant). She said ABVD is tough because it takes 6 months but that it is more manageable than high dose chemo. She explained that Hodgkin’s lymphoma is usually very chemosensitive and even with very advanced and bulky disease, remission can be achieved in most people with ABVD, so that’s why they don’t use high dose chemotherapy upfront, because most people don’t need it. I didn’t have expected outcome with ABVD so I needed ‘salvage chemotherapy’. This would involve giving me a combination of drugs I hadn’t already been exposed to, the aim of which was to shrink down what was there prior to transplant. The less disease you have on board at the time of transplant, the better the outcome.
She went on to explain that ‘salvage chemotherapy’ is done to debulk and demonstrate that even more intensive chemotherapy (the stem cell transplant bit) is going to be worthwhile. If the cancer is completely resistant to the ‘salvage chemotherapy’ there is no point doing the transplant as it would just cause side effects with only a small chance of benefit. She said I would need to demonstrate a response to the salvage chemo in order to go on to have the transplant, but that I didn’t need to be in complete remission. She also explained that I was unlikely to be cured with ‘salvage chemotherapy’ alone but that after a transplant, remission was much more likely to be long term. I asked what would happen if the ‘salvage chemotherapy’ didn’t work and she said we could try a different type of ‘salvage chemotherapy’ and then go on to transplant but the chances of having a long term benefit from transplant go down if the lymphoma doesn’t respond initially.
I was told the chance of success with ‘salvage chemotherapy’ and stem cell transplant was in the order of 50-75%; success being defined as the likelihood of getting into a “good durable remission”. Hmmm, not using the word cure. I then asked if it was the case that because I hadn’t responded to the initial chemotherapy (the ABVD), if I did then achieve remission following the transplant, was the lymphoma more likely to come back in a few years. “Yep!” She said that if you need additional chemotherapy at this stage, there is a higher long term risk of relapse than if you just go into remission with standard chemotherapy.
She then injected some positivity into the conversation and said that my lymphoma was likely to be chemoresponsive and I was likely to go into remission. “You’re not stuffed”, she said. I was told that there are other types of lymphoma where I would be stuffed if I was in this situation I found myself in now; not responding to initial standard chemotherapy.
The salvage chemotherapy was then explained in more detail. I would have two cycles and would be in hospital for about a week each time as the chemotherapy would be given over a few days. My blood counts would drop after I was discharged and I would need transfusions. The next cycle of chemotherapy would start when my blood counts recovered, which would probably be about two to three weeks after I was discharged from hospital. There was no set schedule like there had been with ABVD (given fortnightly); it would depend how long my blood counts took to recover. The ‘salvage chemotherapy’ part of the treatment would take about 2 months, then I’d have another PET scan to assess response, then stem cell collection and transplant if the PET scan looked at least 50% better.
Take home message number 2: There are no set dates for this type of treatment, making it very difficult to plan anything and to know whether I would be in or out of hospital at any given time.
I asked when this treatment would start. She said there would be a bone marrow transplant meeting the next day at the hospital in the city, where my case would be discussed to make sure everyone agreed on the planned treatment. I could then be admitted later that week or early next week but I could delay it for a week or two if I had something special on. I mentioned the walk (The Weekend to End Women’s Cancers) I had signed up for along with a team of 29 other people, including two uncles who were flying over from Perth. That was about a month away and she advised me that it would not be wise to wait that long. I don’t think I was really considering waiting until after the walk but the prospect of not being able to walk with my team was not a pleasant one. She said the longer we waited, the more progression there would be and the more work the chemotherapy would have to do. “We are hoping for a very good result so it’s best to just get on with it!” I decided I would prefer to start treatment next week as that way I knew I had the next few days and the weekend clear and I could attend a trivia night on Friday night that had been organised by members of ‘The Good Tittie Team’.
I asked what drugs I would be having and she said the protocol was called IVAC. Low blood counts were the main side effect, along with the usual hair loss, mouth ulcers, diarrhoea etc. I would also need a Hickman line inserted which is a means of having permanent intravascular access, similar to a PICC line but there is less risk of infection with a Hickman line and it can stay in for longer. I would need regular blood tests and transfusions after being discharged from hospital following chemotherapy and the dressing on the Hickman line would also need to be changed weekly. My neutrophil count would be zero for a while after the chemotherapy and if I got sick or had a fever I would have to go back to the hospital in the city, quickly, but fortunately the blood tests, transfusions and dressings could be done at the private hospital close to home where I had had all my previous treatment.
It was made clear to me that this treatment would completely take over my life and be a priority. “It is shit and has to be dealt with” she said. I then mentioned the trips to Bali and New Zealand that I booked on the day of my supposed last chemo infusion on 30th December last year. She said she didn’t know if I would make it and that trips in May/June might be pushing it. She said that I might be finished treatment and be out of hospital but I might not feel up to an overseas trip.
I then asked the hard question. “Will I die from Hodgkin’s?” She told me I had more than a 50% chance of going into remission with this treatment, so I should be OK in short term. She went on to explain that people often go into remission after a transplant and stay in remission for many years but there was probably a 50% chance of long term relapse, as opposed to 20% if remission had been achieved after ABVD. If I was to relapse down the track, there would a good chance of getting into remission again but not as good as now. With each relapse, the likelihood of achieving remission worsens. It wasn’t sounding great to me but as my haematologist told me on day 1 of chemo last year, “statistics are for statisticians”.
I also asked if it would have made a difference if we’d realised ABVD wasn’t working earlier and changed the chemotherapy regime to BEACOPP. She said it is possible I would have benefited from changing to BEACOPP but nobody would have done it based on my PET scan. I wonder if the German’s would have. Having very chemoresistant disease is not as good in the long term so it wouldn’t have been better if the early PET scan didn’t show such a good response and fool everyone into thinking the chemotherapy was going to work.
So was all that chemotherapy I had last year a waste of time? She said the goal was to get me in to remission and it didn’t achieve that but she didn’t want to tell me “6 months of shit chemotherapy” was a waste of time. She said that if I hadn’t had that chemotherapy I’d probably be dead by now. I’m not sure if that’s true but it’s one way of making it feel like it wasn’t a complete waste of time.
She then asked about what support I had. I would be in hospital for large blocks of time and if I got a fever or felt unwell when I was out of hospital, I would have to go straight back to the hospital in the city, even if that was in the middle of the night, so I would need someone to look after my kids at the drop of a hat, and someone to take me to hospital or call an ambulance. I think anybody reading this blog knows that I have a fairly good support network. Understatement of the century!
I asked about work and she told me I wouldn’t be able to work during this treatment. I would need at least anther 4-5 months off. She said people need at least 8 weeks off after a stem cell transplant and then usually go back to work part time initially.
The hospital I would be admitted to in the city is a public hospital. I could be admitted as a private patient but she told me that wouldn’t make any difference to my day to day care. I would be seen daily by the registrar and resident and reviewed several times a week by which ever consultant happened to be on ward service that month. I would have preferred daily review by the same consultant (of my choice) but there wasn’t much I could do about it in a public hospital.
She then felt the lymph nodes in my neck and commented that they were “piddly little things”. If only they’d caused a piddly little problem.
The consultation ended with her saying, “You’re still in with a chance so we’ll just proceed with the expectation that you’ll get into remission”. She reiterated that I needed to have things sorted out at home and needed people to be able to help in the middle of the night, at short notice, if I became unwell.
Take home message number 3: I would need A LOT of support and would be relying on people for A LOT of help during this treatment.
I know you’re wondering how on earth I remembered these consultations in such detail if they occurred 4 months ago. I’d like to say it’s because I’m brilliant but I recorded them. It’s interesting listening to them again to write this post. I walked out of the second consultation thinking that this haematologist who I had previously thought was overly positive, was not positive at all. She would not use the word cure and would only talk about achieving a “durable remission”. In hindsight, I don’t think she was being negative, she was just telling me how it is, and that’s how I like it. At the time though, I left with the feeling that if this salvage chemotherapy and stem cell transplant didn’t work, I was stuffed and I was going to die. I didn’t remember the bit about there being a 50-75% chance it would work and there being further treatment options down the line. I told a few people of my opinion about my future (that I was stuffed it this didn’t work), but nobody in the family of course. And again, I’m glad I protected them from that because I’m certain it would have sent them into a state of panic and I now know that it is not necessarily true.
After the appointments, I picked up my daughter from school and took her to her swimming lesson. On the way to swimming, she asked me how people get to heaven – gotta love the timing of that question! I can’t remember what I told her but I asked her why she had asked that question, wondering if she thought I was going to die. The reason she gave for asking is actually pretty funny. She told me that she went to the toilet at school that day and that reminded her of when she went to the toilet at home and there was a dead moth on the floor. That it turn reminded her of the dead lizard her papa had found when he and her cousins were at our place and I think they had had a conversation about heaven then. Love the way kids minds work.
I knew I had a tough few months ahead of me, but I had no idea how tough they would be. It was all a bit of a shock really and I felt like I’d gone from having a cancer that really wasn’t a huge deal (although not good) and I’d be cured with a bit of chemotherapy, to things suddenly becoming very, very serious. This so called ‘good cancer’ had turned to shit overnight. I think Lisey told me I had the fucked up version of the good cancer and that sounded about right to me. Maybe I need to change the title of this blog.
3700 words and I’m still 4 months behind. Better keep writing.