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.

One big muddle

It’s been a while since I last wrote (hmmm…..a common theme to this blog!) so I thought I would try to find half an hour to write a new post.

Things have been absolutely manic here; Nick took a new job, Nick left aforementioned job and took 3 months off work to enjoy the summer, Rebecca started secondary school, Sam has had exams for his secondary school, we bought a house, we redid the house and we put the house back on the market! In addition, I have started working for myself in an attempt to revive some sort of career in the charity sector and/or HR (whilst still being available for the kids). And the result…..one very tired me, and life turning into a big muddle!

In many ways, I’m not really surprised. It’s a lot to keep on top of at the best of times, but when your memory is shot like mine has become, it becomes even harder. I used to pride myself on my organisation skills and my ability to do ten things well at the same time. And my ability to remember names and what those people told me. Now…..not a chance. I don’t really know why. It could just be getting older. I know my older family also struggle a bit with their memory. Or it could be ‘chemo brain’ that everyone talks about. My body went through a fair whack when I went through my Stem Cell transplant in 2011, and in reality, I am still on a mild chemo drug for my maintenance now.

Whichever it is, it can be remarkably frustrating though. I tend to be someone who has lots and lots of ideas.I’m sure it drives people round the bend as I always have something that could be done better! My issue isn’t coming up with the ideas though, it is actually managing to remember them through to fruition. The number of great presents I’ve thought about, and then before I know it, it is 2 days before I need it and I have no way of sorting it out! Or birthday cards that I get a month before the date and then forget to send and so I look like we don’t care! Or friends I think about regularly but don’t call because I or they will be busy, and then I forget until it is again, impractical (thank god most of my friends forgive me my lack of calls!)

I definitely need to come up with a plan. Lists are one thing, but I often forget to write it down before it is forgotten….or I end up with lists in places that I forget about….so very frustrating. When we, one day, get our new home (yup, still in rented!), I hope that I can set up a system with a great big whiteboard to use! It could well be the answer.

Anyway, let’s forget that for now (no pun intended). One great thing that has happened this month is seeing our 12 year old start secondary school. I look back to when I was diagnosed with myeloma in 2009 and remember how convinced I was, that this wouldn’t ever happen. I don’t even think the consultants wanted to put my mind at rest on that one. It is hard to put into words how it felt to see her walk away from primary school and start on her new journey….and how proud I am to see her do it all with such happiness. Sam will do the same next year and I don’t have to worry if I will see him off which is amazing. Of course I still worry a bit about the future. I’d be lying if I said there is never any concern about that but I do feel like the concept of seeing them off to University is a realistic one now. I’m not wishing their lives away, but I need things to keep focusing on and looking forward to…they help to keep me positive!

It’s also why work is so important to me. I’ve now set up (through necessity!) as a sole trader so that I can do corporate fundraising for a Birmingham based orchestra that helps the local community. I’m hoping, that if I can work well with them, it may lead to more work and help me to have a role within the house as well as being a mum and wife. Oh, and if anyone out there needs help with their social media, minute taking, internet research etc, I’m happy to take on roles like that alongside what I’m already doing!

Right, talking of work, I probably  ought to go and do some now! I have my monthly hospital trip tomorrow, and my niece’s hen weekend on Friday so as always, life is very busy!

New Multiple Myeloma Treatment Guidelines Personalize Therapy for Patients

Researchers at Mayo Clinic Cancer Center have developed new guidelines to treat recently diagnosed multiple myeloma patients who are not participating in clinical trials. The guidelines give physicians practical, easy to follow recommendations for providing initial therapy, stem cell transplant and maintenance therapy. The guidelines are published in the current issue of the journal Mayo Clinic Proceedings and represent a consensus opinion of hematologists at Mayo Clinic Cancer Center sites in Minnesota, Florida and Arizona.

“Multiple myeloma is an incurable blood cancer that affects more than 20,000 people in the U.S. each year,” says lead author Joseph Mikhael, M.D. a hematologist at Mayo Clinic in Arizona. “Over the past decade we have made great progress in understanding the disease, developing drug therapies and increasing overall survival. However, as a medical community we haven’t done as good a job at optimizing therapy based on a patient’s individual risk factors.”
Dr. Mikhael says the new guidelines will help patients with low-risk disease avoid the harsh side effects of therapy and will reserve more intense therapy for patients with aggressive disease.

Among the guidelines:

*A strong recommendation to enroll patients in clinical trials as the first option for therapy or supportive care.

*Separating patients by risk into three groups to make the most of new drug therapy: high risk, intermediate risk and low risk. Previous guidelines included only two groups: high risk and standard risk.

*Adding factors to assess the risk the multiple myeloma poses to the patient, including use of gene expression profiling to help identify patients with high-risk disease.

*Greater emphasis on delaying stem cell transplants to take advantage of improved chemotherapy, resulting in better responses.

*Maintenance therapy using drugs such as lenalidomide and bortezomib that balance benefit with short- and long-term toxicity.

Link

This is Good News, but we want Great!

I stumbled across an article featuring Dr. Ken Andersen from Dana Farber (Thanks Myeloma Beacon!). He presents where he thinks treatment options are today for MM patients and ends with this:
“The median survival, especially in younger patients, is seven to eight years. Maintenance is adding at least another several years to that. So a newly diagnosed patient today has a likely median survival of over ten years.”
I am very happy to see an expert in the field raising the bar in terms of what a relatively healthy younger patient should expect in terms of median survival given the novel therapy that is in practice today.
The survival rate is trending in the right direction, but we need to continue to push for better outcomes.


Maintenance Mode

Quick update on the stomach bug. Cassie was awarded the gold star of domination as she was the single soldier combating Ocean and Iris’s ralphing, while wounded herself by the same bug. Fortunately this battle lasted only 24 hours. I think Cassie is still a little depleted from her heroic effort that successfully kept the ever-so-happy Ruby and me safe from the invading stomach bug that waged war on our household.

Monday marks the end of my first 21 day cycle of maintenance which kicks off 7 days rest. At this point I am down to two side effects: (1) neurothapy (2) fatigue. They both present more as the day progresses, but are manageable, especially in comparison to the side effects that hit me when I started this treatment journey back in October 2009 (re: 12 days of projectile vomit).

I have had enough energy to shovel the affects of Snowmaggedon, and on a more enjoyable note, take Ocean ice skating for his first time this season. He dominated the ice and I am so thankful that we are able to share in these experiences; especially the hot chocolate! Ocean has also decided his favorite wintertime activity is throwing snowballs at Daddy. Good thing he throws like a 4 year old.

Much love to the Myeloma community and everyone following this crazy journey. -Phil