Facing a New Future

Another post where I start writing it before I have all of the facts. I actually felt physically sick from my appointment yesterday. More worried than I’ve probably felt since I was first diagnosed back in 2009. I want to be honest but I’m actually quite scared about what honest might look like.

Yesterday, my consultant told me 2 things that weren’t great. He told me the lesser of the two things first: My stem cells – not enough were harvested back in 2011. Not a huge deal. It means I have to go through a stem cell harvest again (which I hadn’t wanted due to being really ill first time), but the process is easier at the QE with them not making you have chemo – just the G-CSF injections (these stimulate your body into making more stem cells).

So whilst this wasn’t the news I’d wanted after months of waiting to hear, it also didn’t feel like the end of the world. I could still harvest in March / April and have my transplant in April/May. This was scenario one.

However the second thing was: My Paraprotein levels look like they’ve plateaued. Now this could be ok if they decide they have only plateaued and aren’t rising. But his fear is that actually, they’d like them to be lower than what they are (9.4), and that if this is the case, they would like me to have some extra chemotherapy to really blast them before a transplant. This wouldn’t just be chemotherapy like I’ve been on for the last six months where a lot of life has been able to continue. This would be me on a cocktail of high dose drugs (called DT-Pace) that I would be given 24/7 for 4 days, and where it could take up to 28 days to recover (in hospital). This would probably be repeated at least twice in the hope that my paraprotein would decrease. Then I’d still have to go back for the Stem Cell Transplant after this where I would definitely be in hospital for 3 weeks. This DT-Pace would result in an earlier hair loss and being pretty poorly. And would really disrupt everything for the kids, and for Nick for an extra 4 months or so.

But what I’m really scared about is that it would mean that I’d be on my third line of treatment. With myeloma, every time you go down a different treatment route, you are getting closer to running out of options. First and second aren’t the end of the world. Third probably isn’t either. But if my myeloma has mutated that much, it might not respond to third line treatment either. And is less likely to give me as deep a response.

I have spent the last 8 years becoming a ‘glass half full’ person. I’ve tried so hard not to let myeloma dictate who I am, what I do, or allow it to negatively consume me. I think I’ve succeeded. But this is all very scary and I am back to that feeling of helplessness and a fear of what might happen in the future. I am so scared I won’t see the kids leave school, or graduate. Will we get to finish the house that Nick and I have been lovingly trying to renovate? Will I reach my 50th – something I took for granted even when I knew I was relapsing. I never thought I might not actually reach it.

I know this might be a tough post to read. Believe me, if it’s tough for you, it’s even tougher for me to live it. And for Nick.

So bear with us at the moment. We’re trying to work out our priorities. We’re trying to make the right decisions – for the four of us first and foremost. But then for everyone around us. And we don’t want to give up – there’s a long way to go.

2020 – A (Belated) New Year!

I started writing this post a couple of weeks ago at my last consultant appointment and forgot to post it so here it is with a postscript at the end!

Although my last post was written on Christmas Eve, looking back on it I must have been Hugh as a kite!! I hadn’t realised quite how bad it was until Nick told me on Christmas Day – by the end it didn’t make any sense at all! But the good news is that the sleeping tablets got me asleep and I had a much better Christmas because of it!

In fact we had a lovely Christmas and New Year. It was massively busy with guests but a great time of catching up with people and making the most of my health as it is at the moment.

And now we’re on the countdown. Or at least I am. Unless anything changes, I have 10 weeks left on treatment, before I have a 2 month break and then my second Stem Cell Transplant. I really do think myself lucky to have had 9 years inbetween my transplants but it doesn’t stop the interpretation that I’m feeling about going through it all again. We’ve got a date now for February to discuss the procedure (and how it might have changed from my first time) so that will be interesting … it has definitely made it feel more real!

But as for the here and now, things plod along really. As I said, I’m back on the velcade and it has hit me hard this week. It always seems to when I have a break! I slept for 3 hours last night (while the kids made their own dinner and sorted themselves out), and then got up this morning, pottered for half an hour and then was back in bed until it was time to leave for hospital at lunchtime! And I’m still exhausted and feeling. Very bizarre.

None of it is made easier by the fact I’ve now also been diagnosed with Meibomian Gland Dysfunction (MGD). It basically means that the glands in my eyelids are blocked and so can’t secrete tears properly. So I either have really dry, itchy eyes, or I have tears rolling down my eyes! Normally the latter! It makes you just feel even more tired and blurry eyed than normal which I can’t imagine helps my overall feeling of wellbeing.

Haha. Also just had a letter today from Sajid Jarvis saying well done for winning the Helpline Volunteer of the Year Award! He’s our local MP but I was quite impressed that he wrote. I might even see if we can get him to donate something for Sam’s #15B415 challenge! Someone might want the normal bottle of wine that gets sent through, signed!

Postscript:

So not much to add since what I wrote above. Everything is still on track, and the sleeping tablets are continuing to help me to cope with the lack of sleep…although this week has been exhausting (but due to sorting my dads house all weekend and lots of wallpaper stripping!). I’m still waiting to hear whether my stem cells from first time round are viable but will hopefully find out next week….it’ll be a massive relief if they are!

In the meantime, I’m feeling pretty positive about the #50KB450 fundraising at the moment. We’re nearly at 10% already, much helped by asking people to donate instead of sending me bday cards this weekend! I’m also sending out lots of letters to businesses that I know to see if they can help as that’ll be my easiest way of raising money! Sam is doing really well with his #15B415 challenges (he’s raised over £1000 himself!), and all the other family and friends who have got involved have done amazingly well already, with more coming in all the time. I feel ever so humbled by how much people have been prepared to do!

Time for an update

I haven’t written properly for a while. Partially as I’ve been busy trying to be organised for Christmas (just in case I get ill!), but largely because there hasn’t been an awful lot to say. Which has to be good news in the world of chemo and myeloma.

So I’m sat here at the QE in Birmingham, trying to make the most of my time waiting to see my consultant. For anyone who doesn’t know, it’s my standard monthly check-up. We tend to talk about my numbers, I ask the questions that have been building up, and then I leave.

We’re getting closer to these meetings having a bit more substance to them though. Who knows….maybe even today’s will have more to say. But the idea last month was that we’d start talking about my transplant in January, with the idea that I’d be having it in March / April. I’m hoping that’s all the same, although there was a slight thought that perhaps my numbers are starting to plateau a little….i.e the drugs may not be doing quite as much now as they had been doing. That’s my main question for today….what would that actually mean if they’ve stopped working.

The idea on DVD (darathumabab, velcade and dexamethansone) was that I’d be on it until the transplant, and then after the transplant, would stay on the Darathumabab as a kind of maintenance therapy…..well I think that’s what he’d planned! But if it has stopped working, I assume that carrying on with the Dara won’t be an option and that I won’t be on any kind of maintenance. That’s slightly unnerving as I had maintenance therapy last time and felt it really helped towards my 8 years of remission. I desperately want that long again. But maybe that’s expecting too much. I must look into what the new figures are for remission after a second transplant. It used to be that they expected you to get half the time you got for your first, but I think that’s old news. I know people who’ve had far longer from their second transplants, but I would also imagine that if you have people like me who had maintenance first time round, that you could still get less time from the second if you don’t get to have maintenance.

UPDATE:

So I saw my consultant yesterday and the good news is that my numbers have decreased even further from 11.2 to 8.6 – a brilliant decrease and it means those drugs are working (and perhaps it’s worth feeling rubbish most of the week!).

The bad news is that my consultant got it wrong when he said that I could come off the velcade and dex in January. Apparently I need to stay on them until March, and after that is when I’ll need a couple of months without them before my transplant (basically, they’re pretty toxic drugs and they want them out of my system). So it now looks like my transplant is more likely to be May/ June rather than the March/April that we thought.

I can’t decide if I think this is good or bad news. It’s definitely bad that I’ve got longer on the velcade and dex…they both make me feel fuzzy, exhausted and even sick at times. I’d been hoping I only had weeks left of it. But, the longer I wait till transplant, in some ways the better. Every month we seem to see developments in the treatment of myeloma, and we just don’t know what a month here or there might offer me. Revlimid, the drug I had as maintenance therapy last time round, but on a trial, may be available from October next year. But you have to start it within 3-4 months of your transplant. So if I can postpone my transplant, just possibly, I might be eligible to give it another go! That said, I might be told I can’t have it anyway!

I suppose if I’m honest, I’m just a bit fed up of feeling so shattered. It feels harder at this time of year too when everyone is enjoying a social life and I’m asleep on the sofa by 6pm. I’m slightly dreading Christmas Day and New Year as they both fall on my worst days of the week. But I want to be excited about them and I want to organise all the things that we have done and make it special for the kids and nice for Nick. I wish the drugs could all go on hold over Christmas and that I could just feel normal again for a few days. Thank god my temper seems to have calmed a little! That’s the only positive thing. I’m at hospital on the 22nd for an MRI to check out my back, the 23rd for my infusion and chemo, the 30th again for more chemo and then on we go. It makes me feel tired just thinking about it all.

Anyway, I think I’m just tired today so hopefully I can gee myself up a bit tomorrow.

Head Up and Get on

It’s been just over two months since I started on phase 2 of my treatment journey….i.e treatment since I relapsed. I felt so bouyant when I started it, and really ready to just get on with it, have a few months of treatment and go on to my transplant. Of course I knew what to expect so surely it was going to be a relatively easy walk in the park …. the house and the family would be fine, and work wouldn’t get in the way until I got to the time I went into hospital for my transplant.

Nope…..

I’m struggling. Really struggling emotionally. And actually finding it quite hard to admit it to most people. I’m trying really hard to keep life normal and I know that’s good and mentally in some ways, will keep me stronger than if I allow myself to totally collapse. But it doesn’t take much when I take some downtime, for me to have the time to totally break down in tears and struggle to get my head around this current treatment regime and how it is making me feel, behave and act. I think that’s why I’m keeping so busy because I don’t want to be a wreck whenever I’m not! Poor Nick and the kids don’t know when I’m going to be strong and when I’m struggling and they have been amazing at trying to keep up

Anyway, Nick and I had a small breakthrough this week where I acknowledged for the first time that the side effects from the drugs, largely the exhaustion, but other smaller ones too, were impacting on my ability to cope. I have so many ‘big rocks’ in my life (as Nick likes to call them!), that I’m struggling to manage them all. The family, friends, my father (now with worsening dementia & moved to a home), work, the house, the garden, netball. All of them that have been majorly important to me, and that I haven’t wanted to compromise on any of them.

For the first time, I admitted that something had to be put to one side, and after a long discussion, I have agreed that the something that I’m going to cut right back on is my businesses. It’s been a really hard choice but I’m finding it harder to do it well, and I don’t want to let clients down, In addition, being social media, it is something that stays in mind almost 24-7, and I often find myself working when I should be resting – not good for anyone! I’ve worked so hard to build it up and frustratingly, I was so close to feeling like I was getting where I wanted to be, but I’ve made the decision now to take away the social media management aspect of the business and just focus on LinkedIn training as and when it comes up. At least then I can fit it around when I feel capable of doing it, and it only takes up a couple of sessions of headspace! I don’t quite feel better for having made the decision, but I think I will once I stop at the end of the month. Hopefully it’ll only be temporary until I’m back on my feet next summer, but we’ll just have to see. And hopefully I won’t regret it.

The other thing I’ve found really hard, and I’m only just starting to admit this to Nick, is my relationships with other people. It’s been strange to see the change in how people handle what’s been happening this time round. I’ve got some amazing friends. Some new ones up here in the Midlands, who are always checking in on me even with their own issues. And some amazing friends from my school days who I know are there at every corner too and, despite us now living what feels like a million miles away, I know that they are always there if I could only pick up the phone more often and tell them I need them! And a number of other great friends who really care and keep in touch.

But despite all of this, and despite having the best family in the world, who support me every day with love, cuddles and understanding, I feel very alone sometimes. Maybe my fundraising hasn’t helped as people are so bored of the whole story, that they have switched off what is going on now. Or maybe people I thought cared, just didn’t. Or wrong place, wrong time. I think it’s quite a common thing to happen with cancer (finding that friends drop off) but I didn’t experience it first time round. Or maybe I just didn’t acknowledge it that time, because the people who ignored my diagnosis weren’t that important to me. This time, they have been and whilst I try to understand it, it can hurt sometimes.

I’m very aware that when we made the choice to move to the Midlands, we made this aspect of our life more difficult. We knew that we were taking ourselves away from a support network that was easy, and we did it in the brave and optimistic hope that I would stay in remission. But with the knowledge that I may not. So, this isn’t meant to be about me guilting anyone particularly although I understand that there’ll be people out there that will think I am, or will say what I’m saying is unfair and puts pressure on. But as I’ve always reminded people….this blog is for me first and foremost and I needed to get this off my chest in the way that works for ME. Let me be 100% clear….I don’t want support from people who don’t care because that’s not genuine and I’m not up for fake friends/ relationships. It’s just hard if you realise that perhaps some people you thought would care, haven’t found the time to even ask the question if you are ok.

Anyway, it is what it is and I have decided again that I also need to get some counselling to try and help me make sure I’m handling things better and addressing the bits that are more difficult. It’ll take some time for that to happen though but hopefully the feeling that I’m taking things in hand will help me a bit.

Changing Times

It’s been quite some time since I last posted – life has been really busy which is always a great sign….there was a time (and it was quite a long time!) where no matter what was going on in my life, I couldn’t help but worry about myeloma and what it meant for our family.

 

This year will be 9 years since my diagnosis. I still can’t believe that when I read it back. When I consider we’d initially read about a 2-5 year prognosis….and then thought things were good that this had improved to a 3-7 year one! And here I am, nearly 10 years on and being one of the lucky patients that has still only had one set of chemo and one Stem Cell Transplant. I almost feel like a fraud when I think about my initial fundraising messages that I gave to people. And I can’t begin to explain the guilt that you feel about surviving when good friends around you have long gone or are extremely ill.

 

This is the first post I have written in many months/ years where I won’t allow it to go to facebook though. The reason being that my daughter, now 13, is on facebook and probably doesn’t need to read all of my thoughts, fears and worries about myeloma. So, I’ve decided that I need to be more private about the situation to avoid her being unnecessarily concerned. She’s ever so private and would just worry in silence I think. And hopefully she doesn’t need to.

 

Those of you who have followed me over the years will know that Nick and I have always prided ourselves on being 100% honest with the children. None of that will change, but I don’t believe that the children reading things on a blog will help them to understand my situation as well as us sitting down and talking with them. I need the blog for me. And I suppose I just have to hope that they don’t stumble across it online. That said, Rebecca, Sam, if you do happen to start reading this, please let me know! Nothing is a secret! I know the day will come and I hope that it will give you another way to start conversations with us.

 

I suppose if I’m honest, the reason I am writing this now, is that I’m a little bit scared. My figures are starting to increase at a more regular rate than they had been. Only 3 months ago, my consultant had said he wasn’t worried about them as they were rising so slowly, that if it continued, he didn’t imagine me needing treatment for well over two years. It was like it was the kiss of death. Since then, they have gone up more in 2 months than the last 2 years. Still not really a huge amount, but enough to make Nick and I sit up and listen.

 

It’s amazing really. It feels like I have gone back to 2009/10 when we were constantly chasing figures to see whether they were high enough I would need treatment. The nerves are definitely highly strung and I am back to taking things more personally (please don’t take it personally if I get snappy at you!). My mind is going off track and I’m back to worrying about what we can and can’t plan for the future…..even though I know it’s far too early to be worrying about all of that.

 

Nick and I were walking the other week and it suddenly struck us both that the increase had started around the time we took on the new house and I started my business in earnest. The conversation stopped almost dead at this point when I realized that perhaps stress was my main cause of my myeloma levels rising. The first diagnosis came shortly after I first left the banking world, stressed and unable to cope with the level of pressure they put on me and two young children. Should I have picked up on this earlier? ‘Stress’ is a well known trigger but I suppose because I constantly put pressure on myself, I don’t always associate the two….my life is busy because I like that and I choose it to be so. I’ve loved doing my fundraising no matter how hard the work has been. But maybe there’s a difference when you choose something and know it can stop whenever you want if you need it to.

 

The reality is that I don’t feel I can (or want to!) give up my work – I’ve finally done something I’ve been talking about for years. And I don’t want to give up the house either – it really is a ‘forever’ home, no matter how much of that forever it takes us to complete it. So, I’m at a total loss as to what to do, to make life easier. I don’t want to be the mum that doesn’t let the kids have people back. I don’t want to give up my sport which I love. But is all of that totally selfish if it is what is making my myeloma worse? I really don’t know how to answer that question. I know that I can’t say no….but I don’t want to either L

 

Anyway, maybe I’m getting ahead of myself. There is no talk yet of treatment. It’s still that awful waiting game…the game that is always being played in the background, no matter how slowly, or how much you can shut the door in its face for a while. I’m sat here writing this just before I go into my next monthly appointment. Hopefully things are relatively stable this month and you won’t get another update from me for many more months!

 

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So, it’s probably a bit clearer now why I didn’t want Rebecca reading this yet. This is too much information for a 13 year old, too early in the day. It’s my general ramblings and fears – and probably irrational ones at that – I’m sure many of my myeloma friends going through treatment would tell me to just enjoy the fact I’m not there yet (and they’d be right but it’s just difficult!)

Analysis of the immune system of multiple myeloma patients achieving long-term disease control

The article is called “Analysis of the immune system of multiple myeloma patients achieving long-term disease control by multidimensional flow cytometry.” It makes me think they mean long-term disease control was achieved by flow cytometry. That would be pretty awesome. They really mean that the analysis was done using MFC. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533663/ Highlights (determined by me) […]

BioInvent Presents Positive Data for BI-505 at International Myeloma Congress

04/04/13
BioInvent Presents Positive Data for BI-505 at International Myeloma Congress

Lund, Sweden – 4 April 2013 – BioInvent International AB (OMXS:BINV) announce that the previously communicated positive results from a phase I trial of BI-505 is presented today at The International Myeloma Workshop in Kyoto, Japan. At the same meeting, preclinical data is also presented which demonstrate significantly enhanced efficacy when approved myeloma drugs are combined with BI-505. BI-505 is a human antibody directed against ICAM-1 and is developed for the treatment of multiple myeloma.

The results from the phase I study of BI-505 in patients with advanced multiple myeloma are presented by Associate Professor Markus Hansson at Lund University. The preliminary analysis shows that BI-505 has an advantageous safety profile. In cohorts where extended treatment was available, 24 percent of the patients had stable disease for at least two months, indicating effect of BI-505.

At the same meeting, new preclinical data is also presented showing significantly enhanced anti-myeloma activity when the approved drugs Velcade® or Revlimid® is combined with BI-505 compared to single agent treatment. Combined treatment was evaluated in two different experimental models and the drugs were given in a similar way as to patients with myeloma. In one of the models enhanced survival was observed following combination therapy with BI-505, compared to single agent treatment with the approved drugs. In the second model, complete remission was observed in the majority of animals when combining BI-505 with Revlimid® or Velcade®.

Cristina Glad, CEO for BioInvent, commented: “We believe BI-505 has the potential to address a major unmet medical need in a broad population of patients with multiple myeloma. Based on the results from the phase I trial which are now presented at the international myeloma meeting, we have decided to continue our studies on BI-505 with a new smaller trial in patients with asymptomatic multiple myeloma (called “smoldering multiple myeloma”). The interesting preclinical studies showing enhanced anti-tumor effect when combining BI-505 with approved drugs, support to move forward with a clinical trial in which BI-505 is combined with another drug, representing a logic continuation of the clinical development process for our hitherto most advanced project.”

– END –

Background information:

About BI-505
The candidate drug BI-505 is a human antibody that specifically binds to the ICAM-1 adhesion protein (also known as CD54). Expression of ICAM -1 is increased on myeloma cells, which makes it a suitable target for a candidate drug. BI-505 exerts its antimyeloma activity by inducing programmed cell death in myeloma cells and by engaging patient´s immune cells to attack myeloma cells. In several animal models, BI-505 has been shown to kill tumor cells more efficiently than existing drugs.

The first results from the phase I study of BI-505 in patients in advanced stages of the malignant disease multiple myeloma were reported earlier this year. The preliminary analysis showed that BI-505 has an advantageous safety profile. In dose groups where extended therapy was offered, 24% of these severely ill patients demonstrated stable disease for at least two months, indicating effect of BI-505.

The number of newly diagnosed patients with multiple myeloma worldwide is estimated to more than 40,000 per year.

BI-505 has received Orphan Drug Designation in both Europe and the US for the indication multiple myeloma. This provides BioInvent with market exclusivity for treatment of multiple myeloma with an antibody against ICAM-1 for up to 10 years after marketing approval is granted.

About BioInvent
BioInvent International AB, listed on the NASDAQ OMX Stockholm (BINV), is a research-based pharmaceutical company focused on discovery and development of innovative antibody-based drugs against cancer. The Company’s pipeline currently includes three product candidates for the treatment of cancer.

The company’s competitive position is underpinned by n-CoDeR®, a proprietary antibody development platform. The scope and strength of this platform is also used to develop antibody-based drugs in collaboration with partners who finance the development of the new drug, and provide BioInvent the right to milestone payments and royalties on sales. These partners include Bayer HealthCare, Daiichi Sankyo, Mitsubishi Tanabe and Servier. More information is available at www.bioinvent.com.

For further information, please contact:
Cristina Glad
President and CEO
+46 (0)46 286 85 51
+46 (0)708 16 85 70
cristina.glad@bioinvent.com

BioInvent International AB (publ)
Co. reg. No. 556537-7263
Visiting address: Sölvegatan 41
Mailing address: 223 70 LUND
Phone: +46 (0)46 286 85 50
info@bioinvent.com
www.bioinvent.com