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.

When sleep is like a Facebook timeline!

Last night was a Dex night. I often don’t get to sleep till 3am on the first night, but now I’ve added sertraline back into my concoction of drugs, I thought I’d go to bed at a relatively normal time.

I actually got to sleep pretty fast! But after that it was such a surreal night and genuinely felt like I was working my way through my Facebook / LinkedIn timelines!! It was all I could do to stop myself getting up and doing the things I was having go through my head.

What was weirdest was that it wasn’t really a dream either.

I’m thinking I need a break! Hopefully by the end of this month I’ll have cut down my work quite significantly which will mean that I can take a bit of time out. I might even come off Facebook for a few weeks if I can set up my work to run without me!

In the meantime, I’m grateful for a semi normal nights sleep on a Monday!

Happy endings to come?

So I’m starting this post on Monday 16th September – but not posting it quite yet as I’m hoping that it’ll have a happy ending!

It was my weekly daratumumab injection today – week 8 of the 10 weekly ones and then I’m meant to be going to 3 weekly for that and weekly for velcade and dexamethasone. I’m a bit fed up of it being weekly but was quite chilled on the basis I’m due to see my consultant on Thursday and was hoping to be told we could book a holiday abroad and that my Dex dose might be able to be brought down so I am less vile to everyone (myself included!)

Slightly frustratingly, although not totally out of the blue, there’s been a slight hiccup. They have changed where my bloods are measured and they will now be measured at Heartlands in Birmingham, and not the QE like they have been till now. That would be fine apart from there are often discrepancies between sites which, when you’re trying to assess whether a drug is doing its job, and how well it is doing its job, make it tricky.

I had been told they’d try to measure at both hospitals the first time, given their knowledge of the possible blips, but unfortunately it didn’t happen and I was faced with the news today that my paraprotein had gone up from 12.2 to 16. Quite a big jump for me! And whilst I knew that it may not be a ‘real’ increase, it still made Nick and I quite nervous. Luckily my consultant is superb and is already on it, trying to get repeat bloods done, ASAP, at both hospitals so we can see where I genuinely am. He has had other results do the same thing so is very optimistic that it’s all (or mainly) about the change in testing site.

So, in the meantime, and as hard as it is when it’s playing with my mind, we’ve decided not to share the news with anyone so we don’t worry family and friends. Hopefully within a week (and when you actually read this!) we’ll know what the actual situation is.

It’s amazing how hard it is to not worry ourselves though. Nick is better than me but I’m already worrying we won’t be able to go away or more importantly that he might not let me lower my dose of Dex until we know what we’re playing with. More so, I’ve been worrying that this last two months of treatment has been pointless and that I might have to start a new and more intensive drug regime…what will that mean? Does that mean my relapse this time is more aggressive? Will I be much more ill on a different treatment? Is it just that I don’t respond that well to dara? So many questions coursing through me! And probably all pointless if it is just a blip. But I can’t stop….and not helped as I lie here at 2am on a Dex night 😱. But I’ll stop here and add to my update on Thursday once I’ve see the consultant and know more.

Monday 30th September: So it seems to be good news which is great! After two weeks of waiting, we’ve finally got the results in from Heartlands which suggest that whilst the numbers are higher, they are still going down. We’re still waiting for the QE results which will show us a bit better how well I’m doing, but the main thing is that my numbers AREN’T going up, and that the drugs are seemingly doing the right job still. Again….worrying for nothing!

My consultant was very confident last Thursday when I saw him, that the changes would be due to the change of equipment at the new centre. I just couldn’t bring myself to believe it, and was super worried that the drugs had stopped working and that the past month of horribleness had been for nothing. I couldn’t believe his confidence or Nick’s. I think the idea that it might not have worked was just a bit too much to get my head around. That and my feeling that if I can just get through treatment successfully for the next 12 months, I’ll be in a great place to benefit from the next generation of myeloma drugs which are likely to come through over the next two years. I was so scared about needing alternative treatment already.

I was certainly on edge for those weeks, not helped by the decision not to tell most people what was going on. Living with it almost on your own is quite hard, but it did feel like the right thing to do…born out by the fact that there wasn’t a reason to worry! However, what I’m discovering, is that the fallout the day or two after I’ve gone through one of these ‘waiting games’, is quite obvious. It’s like it takes all my energy to stay positive, and then, even when I get good news, I collapse a little for a day or so once the results are in. Mad really. At a time I should be celebrating, it’s like a train hits me and I get all tetchy!

Anyway, I’m hoping that this week should be a good one without that to worry about now 🙂 What is also good is that last week, they reduced my dex too and almost straightaway, I could tell a difference! Not only did I sleep for a great total of 6 hours on the first night (rather than the usual 2 hours), I also didn’t get close to killing the children, or Nick. I felt so much more in control of myself again and so much more able to deal with the daily things that life throws at all of us. Here’s hoping this week is the same!

Still waiting to book a holiday but hoping to look at it this week – fingers crossed the Thomas Cook collapse doesn’t make it all too expensive, but we’ve got ideas for what we can do if that is the case.

Life outside of Treatment

I’ve been a bit quiet on here the last week, largely for two reasons. We’ve been dealing with my dad after his fall last month, and also, there’s been little change or reason to write much about my treatment.

The last week has been a bit of an eye opener into the gap in care for the elderly. For those that don’t know, my dad has alzheimers (still not really sure at what level) as well as having had his fall and therefore, after a lot of thought and consideration, it was decided that he needed full time care of some sort. This is all despite the fact he’s done so well since he fell, breaking his thigh. His care in Oxford has been pretty amazing in the main. They (with our support I’d like to think!), have managed to get him to a place I didn’t think we’d reach when I saw him a month ago. I honestly thought I’d lost my dad.

But now, he is walking (albeit with sticks and a frame), can occasionally have coherent conversations, and is smiling with the twinkle in his eye that I remember as ‘my dad’.

However, it seems that there is a big gap for those people who are physically recovering, but perhaps require a bit more support to ensure that they aren’t a danger to themselves when they leave the hospital. We’ve had to start thinking about his move out of the hospital this week and were quite staggered to see that they might send him out with only one physio session a week, when he was on 7 sessions. For a man that was improving daily, it felt odd not to at least stagger the physio to try to reduce the chances of him having a serious fall once he was out.

Anyway, we’ve realised that sadly we can’t change that outcome, and luckily, as a family, we’re able to ensure that he can continue to have physio even if we have to arrange it. I just feel for those that can’t, or worse still, don’t realise that they should be. There’s definitely a big gap where those that are mentally sound, seem to slip slightly through the gap. It’s been an exhausting week, trying to work out where dad is best to go now, and how to deal with this gap in care, but hopefully we are nearly there and we can settle dad down.

I have to say that whilst it’s all been going on, I probably haven’t really been looking after myself very well, and as a consequence, I haven’t had a brilliant week with headaches and exhaustion. Treatment has all gone fine in general and my consultant is really pleased with my progress to date. We saw him on Thursday and he basically was all smiles. He did try and ready me for the fact that I may see a plateau at some point and I wonder if this was because my numbers went down less the last time than the first time. But I won’t think too much about that!

Paraprotein Results:

  • At start – 21.6
  • After 1 week: 16.6
  • After 2 weeks: 14.2

I’ve now had 4 sets of treatment, so there’s a chance that my numbers are even lower without us knowing, so that’s good. It looks like I’ve got another 6 weeks of having my infusions weekly, and then I will be able to drop them to every 3 weeks. That’ll be lovely as at the moment I only have one or two days a week where I’m not exhausted or feeling weird and wonderful…hopefully once it goes to tri-weekly, I’ll get the odd week of being able to enjoy life a bit more. At the moment I can’t even enjoy a glass of wine (which for those of you who know me, will know is a BIG deal!)

At the moment I’m not ill as such so I really shouldn’t complain. I have been having headaches for the past few days, but I think that’s been due to my dad too, so I’m hoping that these will reduce this week. I’m definitely getting the start of my neuropathy back too. This often comes from the velcade that I have as an injection and I’m getting the spongy feeling face, hands and toes – it’s hard to explain in words but so long as it doesn’t turn into the more painful form of neuropathy, I really won’t be moaning. And I’m exhausted.

The main reason is the Dex which I’ve talked about before. My consultant is happy to change it but actually, after the first week, I’ve managed it much much better. I don’t sleep on the first two nights, and the third night isn’t great, but all in all, I’ve now got my moods in check for a lot of it. The kids know I might be a bit more snappy or sad than usual, but in general, I’m trying very hard. I don’t want to change the dose unless it becomes manageable, just in case it impacts on how much the other drugs work!!

But the great news is my consultant is onside, at the moment, for us to consider going on holiday in the October half-term. It looks like it might even fall in-between one of my 3 week appointments which would be amazing. He won’t commit until our next monthly appointment at the end of September, but if things are good then, and I’m still handling the treatment well, we might be able to start looking for somewhere hot for October which would be amazing!

I’d also like to just say thank you at this point for all the lovely support and care we’ve had from family and friends over this first month. It’s hard to explain how starting on chemotherapy, and not knowing whether it will work or not, impacts you emotionally. It’s been a really hard time for Nick, me and the kids no matter how much of a grin I try to put on my face! But we’ve had so many lovely messages of support, cards, flowers and gifts, all of which help us to keep smiling along this long journey ahead of us. So thank you….you all know who you are! x

DVD – Day 8

So I’m back into hospital today for the next tranche of Darathumabub, Dex and Velcade. It should be a much quicker experience this week and whilst last week was two days of 9 hours, this week sounds like it’ll just be one day and that whilst there’s the usual hours of hospital ‘waiting around’, the actual infusion should only take around 3 hours. I’m assuming that won’t lead to extra symptoms, but will know later I suppose!

In terms of the ‘Dex effect’, last week calmed down a little after my last post. I was still a bit more emotional than normal, but felt so much more like my normal self which was such a relief. I managed to do some gardening on Saturday (with everyone checking in every 30 minutes asking if I was overdoing it!), and went to visit my dad on Sunday which I was so relieved to do.

It’s been hard knowing that he’s in hospital at a time that I can’t be there to support him. He’s had the operation on his leg and that went really well, but he is very confused, can’t really put a sentence together any more, and most worryingly for me, doesn’t seem to have any drive to get up and walking. They think he could walk again if we can get him past the mental barrier / pain that he currently has stopping him. Interestingly, they think that his dementia may be influencing the pain and that whilst healthy patients would fight through the pain, when you have dementia, apparently it can stop you from being able to do this so well. The next week will probably be a big one in terms of how things progress or otherwise.

So I’m trying to get myself ready for the week to come. I think I might take myself off social media from tomorrow night for a couple of days while I deal with the potential dex side effects but I need to find a way to make sure I’m good for the weekend. Rebecca is doing her 3 Peaks to raise money for her to go to Romania.

I’m so proud of her as she hates walking so it really is a big thing for her. She’s got to raise over £1800 so hopefully this will help her a lot. But it means I really want to be there to support her. I have admitted to myself that walking 26 miles up and down mountains, probably isn’t the most sensible thing I could be doing but I do want to be able to support by taking them, collecting them and maybe doing some of the easier walking bits alongside them. So, keep your fingers and toes crossed that the end of this week is as good as the end of last week so that I can do all of that…..oh and I need to visit my dad on Friday too so that I fit that in!

Right, I’d better go and do some work now while I’m waiting for the dara to arrive….

Dex f**king Dex

I would apologise for my language but genuinely I now understand what I didn’t last time I had treatment. People used to talk about the Dex effect and it turning people into a Jekyll and Hyde character – I never suffered and never really got it. A funny tasting mouth but that was it.

Oh my god is it different this time. I’m only on day 3 and I’ve already experienced every level of emotion possible, including the most massive anger and frustration. Now, admitting this, does not mean that the reasons for my anger are unfounded, but perhaps the way I’m expressing them and the depth to which I feel them are.

I’d like to scream at certain people. I’m not particularly nice to the kids even when they’re not behaving any differently to normal. Nick has just about got away with everything but I don’t know how long that will last…I think he might just hide away if he’s got any sense!!

I know we’ve got more going on than a lot of people at the moment but life has suddenly seemed to swamp me and other peoples selfishness really grates. Not only am I dealing with starting chemo and all that entails, my dad is about to head into the need for a lot more care after his fall and operation and I don’t know how I can help properly when he lives 90 minutes away. Our builders are progressing but they’re now likely to be in for at least half a week longer than we’d wanted. And that’s before we can try and find a decorator who we can trust to help. My work continues (as I want it to to be able to stay sane and need the money). The kids are on summer holidays while all of this goes on and are already struggling with the fact that things are different and more is needed from them. My back still hurts and to too it all I also have pain from sleeping badly. Thank god the sickness and diarrhoea that the dog had yesterday seems to have subsided.

I’ll leave it at that. Bah humbug that I am. But I needed to vent. Anyone have any idea how long this Dex effect lasts after you’ve taken the tablets? I’m hoping tomorrow will be a better and more positive day.

Wow, It’s Been A Long Time!

I’ve started writing on Medium.com which means I’ve stopped writing here.  In addition to that, I was cancer free from my transplant till my 5th year anniversary – almost to the day.  With that said, below area  few links to my most recent posts on Medium and here is the text of my last post on Medium.  s always, thank you for reading!

It’s Not The Chemo…
Fighting Again…
My Re-Birthday

It’s Not The Chemo…
The last few weeks have been a roller coaster. There are a number of things being juggled right now but the funny thing is, it’s not the chemo that’s causing a concern. Sure, the disease is back, I’m back in treatment, but that was the least of my worries. Here’s my most recent timeline, so you can get caught up on the craziness:
  • Feb 7 — The decision is made, my January biopsy and blood work identified that the disease is definitely back and it’s time to take action. Feb 28 is my first date for treatment.
  • Feb 23 — I get an Explanation Of Benefits, via SNAIL MAIL, from my insurance company that the treatment plan has been denied as “not medically necessary” (again, treatment was scheduled for Feb 28 , 5 days later— so I went and got a tattoo!)
  • Feb 26 — I am told I will be on a clinical trial, but will need tests first, so treatment will start Mar 8.
  • Mar 2 — a littany of tests: echocardiogram, EKG, skeletal X-ray, bone marrow biopsy (again), blood work, urine, etc.
  • Mar 8 — I arrive for my first day of the clinical trial. They insert the IV and then the NP tells me I was denied the clinical trial — I am “relapsed” not “refractory” — this is a good thing but it didn’t feel like it at the time.
  • May 8 — I raise holy hell!
  • Mar 9 — I begin a “standard of care” treatment that is easily approved by insurance and start day 1 of my Daratumumab and Velcade immuno- and chemo-therapy regime.
Honestly, the chemo has been fine but the roller coaster of emotions and decisions over a three week period was simply mind blowing. Unlike the chemo that many others take, where they are sick for days or weeks after, the side effects for me have been minimal. That being said, the Dara is closely monitored for the first two sessions as it will cause allergic reactions. My Day 1 had an arrival to Mt Sinai at 0750 — my departure — at 2134 (for those not accustomed to military time 7:50a to 9:34p). I gave up Lent after that and had a beer — i’ll make my peace with the big man above!
Every time I had an allergic reaction they had to stop the infusion, give me something to address the reaction, and then wait 35–40 minutes for that to kick in. Then they re-started the infusion, at a very minimal rate, to see if the reaction returned. I had two reactions with the second being in the early afternoon. With 700ml of Dara remaining, they re-started the infusion with the rate at 25ml/hour. If we were doing 100ml/hour that would be seven hours! It took an hour at 25 till we could increase to 50. An hour later we increased to 100, then 150 then finally 200, the max. It was a long day.
Day 2 (which apparently is Day 8 in treatment-speak) was easier and I had no reactions. Still it was from 0700 to 1720, so a long day! This week I had my first real side effect, which was simply an achey feeling. It was like the flu without the flu-like symptoms. Moving just ached — the shirt moving on your skin didn’t hurt but it was sensitive, like sun burn. The docs gave me Dex, which did help, but caused me to not go to bed till 0100 last night (this morning) and I was up by 5 with one time awake in between. The only other side effects were caused by the Velcade. The Velcad is delivered sub-cutaneous, a shot that goes into the fat in your belly, just under the skin, but before the muscle. The first one left me with a bright red mark, that was hot and did hurt like sunburn. Not bad but noticeably irritating. The second shot had a similar reaction but not as bad. I’ve used Aquaphor to keep the area from getting too dry.
Day 3 is tomorrow and should be quick (relatively, but still guessing around 6 hours). That is my update. Thanks for reading and I’ll have an more info on everything else in the next day or so!
Cheers and keep fighting!

Panobinostat, Velcade and Dex

Well, I’ve had to move on. Pom didn’t work very well. My levels went up high – mid – 2000s and even though they then stabilised, there wasn’t any sign they’d come down. I was very fatigued, but otherwise coped OK. Easter was a bit manic – my consultant was away and while we knew that I’d be going on PVD, I was put on a lot of steroids just to try and hold me steady. Coming down was a nightmare, but I did get some smaller doses to wean me off.

So I’ve been on PVD for a week. It’s quite complicated. I have a chart to help. The regime runs in 3 week cycles. The Panobinostat (also called Farydak) is on 6 days of the first 2 weeks, so has gaps between. I have to go into the hospital for subcut Velcade injections twice a week (Tues and Friday), which is a nuisance. Then I also have quite a lot of Dex (steroid) on several days. Then at the end of two weeks I get what amounts to 10 days off. I am not looking forward to the Dex withdrawal during that period.

I didn’t have any major issues until yesterday, when I was on the loo a lot and felt very tired. I slept quite a bit of the day. Then we went for a walk round the lake and on the way back I felt very faint and weak, though I recovered quickly once I sat down and had a drink. Pano is known for the runs and also the general regime can make you faint and dizzy and bring the blood pressure down. Mine is low anyway. So I guess I will need to take it easy. I am ofc taking Questran for my bile acid malabsorption which causes diarrhoea, so I have upped that a bit and yesterday I took Loperimide too (Imodium), so I’m hoping to keep the runs at bay. I will take advice on it. Today things aren’t so bad, but I’ll be back on Pano tomorrow so might expect them again on Wed. I’m also feeling more nausea than usual – I’m not a ‘sicky’ person but I think I may have to use my anti-sickness drugs a bit more. It is likely though that I will get accustomed to the regime and have fewer side effects.

There is a practical issue to the new regime. I already self-inject my immunoglobulins 3 times a week and some Eprex, which boosts my red blood cells, once a week. This means that I have to find space for 2 Velcade injections. I have begun putting the Eprex into my thigh – which is painful! The Velcade is leaving quite large red blotches, but they are fading over a few days. I am not leaving big marks from my Igs, but do have a couple of big bruises from doing some things too close together. So I’m having to try and be very careful about where everything goes. I have not been taught how to self-inject the Igs into the thigh, and I’m not sure they would be keen on me doing that as you have to get a whole syringe full into the soft part over 10 mins, and the thigh might not work as well as the stomach.

Generally I’ve felt a bit low so far on this – it’s quite hard work, and I would really like to feel well enough to go out and about a bit. I have done so many medications now I think it’s taken a bit of a toll on my constitution. Keeping hopeful that I will adapt quite soon and also that the regime works as well as it does for other people.

PET Scan Looks Good

Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine.  Last Wednesday’s PET scan showed that all five lesions are significantly decreased, and most are gone.  One isn’t even mentioned.

This is excellent news.  We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn’t guarantee freedom from bone damage.  With these PET results, we can be pretty sure that no damage is occurring.  As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra – looked like about BB size – damage that did occur before this regimen, but probably not bad enough to put the vertebra at risk of breaking.

So what is this potent regimen?  Please note: I am not a doctor.  This is working for me, but might not for you.  I am taking Pomalyst (pomalidomide) orally, 2 mg daily, 28 days of 28, and receiving infusions of Darzalex (daratumumab).  At first I received the Darzalex weekly, then every other week, and the last three have been four weeks apart.  According to the Darzalex prescribing document, these monthly infusions continue “until disease progression.”

PET Radiology Report

I’m all for that.  Notice, though, the presumption of disease progression,  Myeloma always figures out a way.  So now that the myeloma is stable, the hope is that the period of stability will last a long time.  Happily, neither medication brings serious side effects with it.

With the Pomalyst and darzalex I am also taking dexamethasone (DEX) 12 mg on the weeks with no Darzalex infusion.  I asked Dr WG if I could stop the DEX, but he said that he prefers to ramp it down slowly.  He voiced the scenario that I have feared from the outset – a broken vertebra would most likely put an end to my running lifestyle.  As he suggests, I will happily (or grumpily) take 8 mg once weekly for the next month at least, before reducing it further.  DEX is no fun, but 8 is better than 12.

Overall the news is good, and life is great.  Before long we’ll be off to Philly, to run the 100th marathon with myeloma.

All Good News

Friday, August 19, 2016:

Wednesday I brought a Mayo Clinic blood draw “kit” to the local clinic, where they drew the blood and shipped it overnight back to Mayo.  Last evening the results showed up on Mayo’s patient portal, and I’m happy!

Since early April my treatment regimen has been 2 mg of Pomalyst every day, with infusions of Darzalex every week and then every other week, currently with 12 mg of dexamethasone (DEX) on the weeks between Darzalex infusions.  During that time my IgG and M-Spike dropped about 20% per month until a month ago, then leveled off.

Wednesday’s results confirmed that IgG and M-Spike are stable, at least for now.  IgG was 515 mg/dL two months ago, 544 last month, and 506 on Wednesday.  M-Spike followed a similar pattern and was 0.5 g/dL on wednesday.  These numbers are as low as they have ever been since my diagnosis 13 years ago, and just a third of their values of last April.  The chemo regimen is doing a great job for me.

Where to from here?  Could we cut the Pomalyst or the DEX?  It’s nice to think about, but mostly I’m just happy to be stable for now and content to wait another month.  I suppose another PET scan is indicated, to be sure that the lesions in my vertebrae have faded back (as I think they have), but I can wait for that too.  I haven’t heard from Dr WG at Mayo yet – perhaps he will have a different idea.

I also had a heart disease scare in the last marathon, but a recent stress test was normal, actually better than normal, so I think the angina-like symptoms were caused by acid reflux.  Also, because my most recent colonoscopy was ten years in the past, the doc ordered one of those and that too was negative.  I feel thoroughly checked out and ready to run a few more marathons!