Neutrophils 3700

I was guessing 1700 / uL, with a little false bravado, actually just hoping they would be over 1000, so I was shocked to see the smiling nurse with the printout showing 3700, nine times as many as yesterday’s count of 400.  Yesterday the doctor and nurses were concerned about neutropenia, asking me how I felt.  Based on prior experience, however, I believed that the neutrophils were there all along, just not measurable for some reason.  After a good night’s sleep they have to be teased out of hiding, or out of some other phase, or whatever neutrophils do.

Note: I am not a doctor – what happens to neutrophils overnight is WAY above my pay grade – I am making this up!  Sort of – here is an article discussing it.  Good subject for study, because I’m sure that there are people who DO know.

Anyway the threshold for proceeding with the infusion was 1000 / uL, so here we go full speed ahead.  I’m already in the chair, waiting for the prednisone to drain into me – the Darzalex can’t be started for another hour after that.

These things happened between yesterday’s blood draw and today’s:

  • Last night I took 20 mg of dexamethasone (DEX), and skipped one dose of Pomalyst.  I think this may be the most important factor in improving the neutrophil count.  This morning my fasting blood glucose was 143, normally about 90.  That is a proven DEX effect, of course, and I wonder if that alone can affect neutrophils.
  • This morning I got up well ahead of the blood draw and ate a good breakfast, including two cooked eggs with a scrap of last night’s salmon, plus uncooked strawberries, blueberries, cherries, and blackberries, with low-fat plain yogurt, every item organic of course.  In that mix we would find plenty of live bacteria, especially in the yogurt where it is intentional, and perhaps the food can cause the neutrophils to come out and play.  I really AM making that up, but it is consistent with the realization that morning blood draws are almost always fasting, and afternoon draws always follow one meal at least, usually two meals.  
  • I did some short but intense adrenaline-pumping exercises this morning just before checking in for the blood draw:  Six flights of stairs, running up as fast as I dared and walking back down carefully, and as many pushups as I could do. 
  • The blood draw itself was done at about 11:00 am, compared with 7:30 am yesterday.  I have always believed (and observed) that neutrophils are at least double at 1:00 pm from what they are at 7:00 or 8:00 am.  Now I am wondering if it might be more about the food than the time of day.  In almost 13 years of treatment I never thought of that until today.
Next week’s blood draw is 7:30 am on the same morning as the infusion.  I will do everything the same as above, except the time of day.  If the doctor agrees I will eat a similar breakfast, too, even if the doctor has ordered a blood glucose test, because the previous night’s DEX will screw that up anyway.  I may not skip the Pomalyst, either, because yesterday’s low count was a false alarm.
We are still waiting for the results of yesterday’s kit draw to show up on the Mayo Clinic patient portal.  This is a real-time post.

Where Oh Where Have My Neutrophils Gone?

In advance of tomorrow’s planned fourth Darzalex infusion, the doctors did a CBC with differential today to see how my neutrophils were standing up to the Darzalex / Pomalyst combination.  Surprise!  Neutrophils were just 400/uL, where the reference range for this lab is 1800 to 7700 /uL.

In other words, my neutrophils measured less than one fourth of the value representing the very bottom of the reference range – the lowest count that I remember in almost 13 years with myeloma.  Doctors and nurses were all asking if I felt OK, because a low neutrophil count (neutropenia) can result in neutropenic fever, potentially a life-threatening condition.  In the past my doctors have stopped treatment when neutrophils dropped below 1000.

So what do we do about that?  I have a Darzalex infusion scheduled for tomorrow.

First, I don’t believe the number.  I don’t doubt the accuracy of the test (much), but I have a history of low neutrophil counts that probably weren’t low.  The neutrophils are actually there, but they don’t show up (at least not as neutrophils) in a CBC with diff.  In the past, I have used two “tricks” to make the neutrophils appear:

  1.  Take the blood in the afternoon.  I have repeatedly found that my neutrophil count is at least double in the afternoon.  In lieu of afternoon, take the blood as late in the morning as possible.  Today’s draw was at 7:30 am.
  2. Do some physical exercise just before the blood draw.  One doctor told me that the neutrophils hide in muscle tissue and can be rousted by exercise.  Another doubted that they hid in muscles, but implied that they were there somewhere, just not appearing as white cells, and told me that it was actually adrenaline that made them come out to play.  We’re WAY above my pay grade here, but either way a little high-intensity exercise could do the trick – I do several flights of stairs as fast as I dare, and one set of pushups, as many as I can.

Please note:  I AM NOT A DOCTOR.  And even though these two tricks do seem to work for me, doctors and patients alike have told me that they don’t work for everybody.  Maybe they ONLY work for me.

A third “trick” is dexamethasone (DEX).  Not a trick, really, but my doctors seem to agree that DEX may actually support my neutrophil count.  As evidence I have had CBC’s for three weeks in a row now, prior to this one, always in the morning and with no exercise, with neutrophils always comfortably within the reference range.  In each case I had taken 40 mg of DEX the night before or two nights before.  This time we moved the DEX by one day, so the blood draw happened to come first, and got this surprisingly low result.  I think the DEX might matter a lot IN MY CASE.

So tomorrow I will use all of the tricks.  I have taken my DEX tonight already, and skipped tonight’s Pomalyst capsule.  I will get another CBC/diff at 10:30 am, after getting myself just a bit sweaty with exercise.  The doctors and I have agreed that a count of 1000 per uL will be the threshold, below which the Darzalex infusion will be postponed until the count gets back up to a safe range.  At 1000 or above we will proceed with the infusion and return to the regimen.

We also drew blood for the myeloma markers today: IgG, M-spike, and light chains.  That was a “kit,” then sent by overnight express to Mayo Clinic.  Those results will come on line tomorrow and I’m mighty interested.

Onward to the next cycle.

So, good news, I guess. My neutrophils are over 1300 so I’ll be starting pomalyst when it arrives tomorrow. Well, I’ll start that night. So, we shall see. Like I said I’m not holding my breath as it really hasn’t done anything yet.

It is cloudy and cool here so great news for the firefighters. Walking this morning was chilly. I didn’t get out till 6:05 and it’s still  dark. Sunrise is 6:45 so pretty soon we’ll be going out even a little later.  Then when daylight savings starts its back to it being an hour earlier.

I didnt get get to the thrift store for drop off yet but have a few more things to add. Maybe tomorrow.

I’d hoping we can get the other room painted this weekend and be done with stuff unfinished. The closet doors from ikea look great and now my daughter maybe wants to sleep in there. I have too many chairs in the front room, a some came from the studio. So now I have to figure out get rid of one or??? I hate having too much furniture . Our house just doesn’t  support it. And there’s no place for them. I’ll probably have B move them to the barn till I can figure it out.

Using the Kon Marie method would have me tossing them so as they don’t really spark joy. Sometimes there is a practicality to consider.

Good news!

Well, for the moment. My labs 8 days into this 4 mg of Pomalyst( that’s double what I was taking) are great. My neutrophils are 2668. Wow, I hope this cycle is the one that does the job. I still have another 10 days to go so it’s still kinda a waiting game. But at least that’s the good news.

We’re walking at 5:30 , still dark but gets light quickly. The just keep walking project is at 90 days into year 3. There’s still a few people who show up this early, and I try and stay out of their way. I mean it’s a big park do you need to walk right behind me:( .

Fall is definetly in the air. Cool evenings ,warm days. My son started his semester yesterday. And my daughter her online program as well. So back to school for them.

This week I’m going to Costco for mostly vegies and bread. ( too hot to make bread still)! But soon. Also, I think I’ll go with her to her work meeting on Thursday and I’ll hang out at the coffee shop. Not totally sure yet.

Still working on budget stuff with the roof and trees. We haven’t heard from either yet so I’m figuring this will all go into September.

1 day and counting!!!! update!!!!

this is it. one day left.

I think mostly I learned “Just do it.”

So here’s to us.

I guess we’ll start on year 3.

Yeah, my neutrophils are 2000…. yes….. it only took 19 days…. On to cycle two of Pom. Even if my numbers don’t go down , and we increase the dose to 4mg, i at least know i can recoup….

Now i just need to message him since there’s no sense in seeing him in 10 days , when I’ll only be on day 10.

Today I’m in beautiful Truckee, Ca with my daughter.  She has a library meeting so I’m here in Wild cherries blogging and drinking a coffee. Truckee is around 6000 feet ,I think. Very cold in the winter. We’re going to have lunch and go to the old part of town that’s kinda touristy. Maybe look at where apartments are. Plus she’ll show me her library.

Tales of the Unexpected

Sometimes in life, and I say this as a 30 year old myeloma sufferer, things do not go as planned. Apart from the original diagnosis, the early side effects, the setbacks,  the tumour and the relapse, My Myeloma has become  quite predictable. Once I have been told a medical plan, I can, with a teeny amount of confidence, know what to expect. 

It was a similar experience coming in to this transplant. I planned, I prepared and I purchased pyjamas; all in anticipation of this transplant running a similar, if not worse, course to the previous one. I told myself it could be different, but only in my assumption that it would be worse, than my memory had imagined, and that was only so I could take the pain if it was. It was a theme that I also hoped would dull the competitive feelings I had towards beating all the negatives of my last transplant. A transplant that saw me go home on Day +16, after being hospitalised on Day +4. What happened in the middle does not count.

Ahead of the first transplant, I was given a whole heap of reading materials telling me what my transplant was going to be like. I chose not to get it and read it all over again this time around, for I had remembered the side effects well enough. Plus, I knew a Medically Trained Person was going to talk me, face to face, through the process and it’s side effects before I could be  prescribed the Megatron. 

Mouth ulcers, diarrhoea, fatigue, nausea, hair loss, temperature, infection and hospitalisation. To me, those side effects were nothing but definite. In my transplant daydreams, I can confirm that said infection was never more severe than the one dose of antibiotics realm (well, when I was not being weak willed). 

It was just a case of waiting for them to start.

Today is Day +11. I feel sick, liquids  and my limited solids intake are followed by many a beefy burp, my hair is falling out, I am constipated, I sleep for 12-16 hours a day and I am able to be comfortable and functioning out of my bedroom for up to one hour each day. I have felt this way since Day + 2. My mouth no longer feels like I have bathed it in sour milk, but on the other hand, I have not deposited anything since Friday afternoon. I did wake up multiple times during the night and this morning experiencing something new, and that new was a little blue, in the form of significant lower back pain. So bad in fact, was said pain, that two hours after waking I was convinced my kidneys were failing. It transpired that the pain is caused by the injection I have had to have everyday since Wednesday. 

From the list above, there is one key and inevitable component missing. It has beds in it, lots of Medically Trained People, too few lifts, a mediocre canteen and views of London other buildings would make you pay for. It’s the hospital. I am not yet in hospital. In addition to this absence, I have also come nowhere near soiling my pants.

The question that has been plaguing me since around Day + 7, is, at what point is it realistic for me to stop waiting for the bad things happen and start planning my discharge? Then, in having asked that question, have I jinxed any chance I have of remaining poo and infection free for the rest of this transplant experience? Actually, have I already asked for the quick and severe enslaught of illness, when I sent an email to my friends at the weekend,  suggesting that there was a small chance that I will not go into hospital, and thus, I needed volunteers to sleep next to me in the hotel this week? 

I have many more questions. I asked the Medically Trained People whether I should be worried about not going in to the hospital yet. Mamma Jones asked whether this would have an impact on the success of the transplant. I asked if it would prolong my overall stay. We haven’t had any comprehensive answers to these questions. On Friday, during rounds, I was told that with everyday I am out in Ambulatory Care, I am a day closer to going home. At the time, I was placated, but with hindsight, that answer is something of a misnomer, for that statement  would also be true were I in hospital. 

I cannot get an answer from anybody. At least, I cannot get one to satisfy me.

My White Blood Count has been rising for the last three days, not to dizzying (or should I say dizzy-less) heights*, but rising all the same. I asked if this meant I was improving. Words were said, but they did not create an answer. I was told that the doctors will look at my neutrophil count, which had been flat for five days. Flat by the way is just a fancy way of saying ‘zero’. Apparently, people are usually flat for ten days. STOP THE PRESS: I just had to go and pick up some emergency morphine from the clinic, and I found out that today’s neutrophil count is 0.49. With regards to pooping green and going into hospital over simply going home, what the devil does this mean? 

This morning I was told that if I were to get a temperature, it would most likely happen today or tomorrow. What does this mean? Six other people had transplants on the same day as me or on the day before and I wager that they have all seen 38 degrees Celsius by now.

I do not trust any of this. According to the nhs.uk, 70% of stem cell transplants experience mucositis, either oral, gastrointestinal, or both. I had no idea there was a magical 30% to whom the colour green, when it comes to the human body, will only ever apply to eyes. Am I in this 30%? Does the 30% include people who have been given Melphalan? Does it? 

In all my planning, not being admitted to hospital was never an option. Over the last week, I have discovered that on very rare occasions, it does happen. With every day that passes, these people become bigger than the Loch Ness Monster to me. Bigger because I do not aspire to be the Loch Ness Monster.

My biggest worry? How reasonable and how healthy is it for me to hope that I can be bigger than the Loch Ness Monster? I do not cope well with disappointment and right now, because I have done nothing but wait and hypothesise, with so many questions unanswered, I have no idea which thoughts and what hopes are realistic. I need to know. If I knew, I could plan. If I knew, I could manage. If I knew, I could stop myself from thinking I am a failure if I ended up getting a temperature or the squits this late in the game. 

It may sound like I have been enjoying  some sort of Freeview only retreat for the last 12 days, but let us not kid ourselves, I am not well. Not being in the Tower is misleading, it’s misleading because thus far I have avoided infections and pain; I did not avoid the transplant. It’s easy to forget that my body is going through quite an ordeal. It can even be misleading to me, it’s misleading because getting dressed, wearing day clothes and walking 160 metres to and from the clinic each day, no matter how much I struggle to do it, makes me temporarily forget that my body is experiencing an ordeal. 

Every other day, I end up getting so tired by talking to a friend for an hour on top of the 20 minutes of observations, that I am forced to sleep for three hours afterwards. A sleep that comes only after I express my shock and question why I feel so poorly. On the days around it, I just sleep. When I am not sleeping, I am waking up with anxiety or from anxiety based dreams. When I am not sleeping, or experiencing anxiety, I try to watch the television. It would be fair to say that I struggle to follow the plot… When I am not doing any of those things, I attempt to hold conversations and believe you, me when I say that, ‘attempt’ is the operative word. 

Fatigue is not just about the tiredness. This whole process; the waiting, the questions and the process is exhausting. Plain and simple.

Who knows how long this will all continue? 

EJB x

* I think that was a blood joke, I have no idea if it works, I’ve taken some morphine.

Hooray my donor cells are starting to engraft!

Hi, after a fairly miserable day yesterday this morning I woke up, staggered to the loo and thought that my backside didn’t seem quite as sore. Then my consultant said the white cells and neutrophils are just starting to rise! Felt quite emotional, despite the fact that I had a splitting headache and felt terrible. Long way to go yet ofc.

Yesterday my nose started to bleed and my knees developed a rash – low platelets. But there was a breakdown of one of the blood storage units and so the platelets didn’t arrive until late evening yesterday. My platelets had gone down to 9 – normal range is from I think about 140/150 upwards…

I have also been stuffed so full of fluids that my whole body is like sausages stuck together and I need more to replace eg magnesium and phosphates. Also having blood today. Hopefully I won’t be quite as tired then.

The G-CSF injection used to stimulate the cells makes me ache badly and I have a dire headache, but hopefully this will pass with treatment and paracetamol.

I have also been put on a different antibiotic as we just can’t quite get the temp down yet – it tends to hover around 37.5ish. I was woken twice in the night, once by the doctor, who eventually got round to me, and once for the mobile x-ray unit who did a chest x-ray.

So lots of issues still to address, but some good news!

Post 18 – Dose of reality

I’ve been busy recently. Really busy. Until last week, I was working 22 hours a week, looking after the kids and trying to fit in 40 Challenges around all of this. So what’s the problem I can imagine lots of you saying. And you’re right to a degree….loads and loads of people do that…..single parents do all of that without any support – at least I have Nick to help me out. Lots of people probably do even more than me.

BUT, every now and again, I get reminded that I am not quite the person that I used to be and that my health is a little bit wobbly. Don’t get me wrong. I am very, very clear that I am lucky with my myeloma. It could have been so much worse. I could have relapsed by now, I could have had bone or kidney issues. I could be constantly ill. So this most certainly isn’t me moaning about it, but just me trying to let people know how things are.

Generally I am really well. I get on with everything these days, and rarely think about my myeloma apart from as a fundraising focus. However, underneath it all, the drug that I am on that I believe keeps me in remission (Revlimid), causes me to have low neutrophils. The lower my neutrophils, the greater my risk of infection. If I become neutropenic, I am at risk of being taken into hospital until I’m not! Basically it would mean that my body couldn’t fight the infection efficiently and I would need to be monitored. At the moment, I have neutrophils of about 1.0….a bit on the low side. If they went under that and I got any sort of infection, I could be admitted.

I know all of this. But I slightly stick my head in the sand, ignore it and keep going. Last week I kept going because it was my last week at work. Then I had the sad event of my godmothers, husbands funeral…I wasn’t about to miss that as she (and he!) have been amazingly good to me throughout my life and now I need to be there for her. And then I fell flat. I got aches, headaches, a sore throat and a cough. I spent the Friday in bed…..until the evening when I made a couple of cakes for one of my challenges that we had on the Saturday…..Nick was NOT impressed. And probably he was right as I felt awful again by Saturday evening. We had to spend fathers day apart as he took the children to visit his 96 year old nan and I couldn’t risk making her ill. I’m still not well although now I think I sound worse than I feel.

it is the one bit that frustrates me these days. I want to keep going like I used to be able to and I don’t want to feel like people are always watching over me, that I have to be careful with what I do, or that I have to ask for help. I want to be 100% again, and not just 95%. Greedy isn’t it?

As I say, I shouldn’t complain though….I just wish I didn’t have that niggling reminder of what my reality is these days!

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0.01

I spent all day yesterday in bed. I did not shower. Filthy bitch. There were many reasons why I did not leave my bed yesterday and keep up with my personal hygiene, all of them, rather predictably, stem from stems. Yesterday, despite the fourteen episodes of slime and my cramps which felt like toddlers were doing the Macarena in my stomach, I felt like that side of things, my bodily fluids, are improving. It is hard to full decipher whether this is an accurate assessment, or whether it is an attempt by me to fool myself into thinking I am getting better.

That said, my fatigue don’t lie. By now, we have such a relationship, where I am merely passive aggressive with him, when he comes in expecting a clean house, dinner and the mental capacity to jigsaw. There is nothing else new in my bag of myeloma goodies, unless you count the sore throat, which worsened after I foolishly drank some water in my sleep yesterday morning.

In spite of all of this tomfoolery, during rounds yesterday, something exciting happened. It’s not actually exciting, it is just words, but to me, they were magic words because it meant that there is starting to be a foundation to my hope that this will be over soon. Dare I say, maybe even a scientific basis to it. The Senior Medically Trained Person told me that I was going toturn a corner in the next day or so. Tea! She did add that this would not result in me feeling better instantly, but I will feel an improvement at least. Tea! Please let it mean tea! Oh bugger, what does an improvement look like?

I occasionally thought about this between my snoozes and cramps yesterday. Like rock bottom was not tangible, neither is an improvement. It’s more fun to look forward to though. . The waiting again, is another thing that would frustrate, were I not on a healthy dose of opiates.

If I want something in my pocket, some proof, I could use that fact yesterday, I had a minuscule, as in, means very little, neutrophil reading of 0.01. Every other day this week, it has been less than that, as in, no reading. It’s a tiny step forward, but one that put a smile on my greasy face regardless.

My fingers are firmly crossed that today sees an improvement somewhere. Come on. My fingers are also crossed for a shower for I need to erm, remove some of my hair before it all by itself.

EJB x

Peritoneal Dialysis Part 2

Bud had rump steak for his breakfast so I think we can safely say he felt better today. He did throw up last night just as he was heading for his pre-bed wee. If I’d been quicker I could have got the kitchen roll underneath it. Fortunately B was quicker at passing me the sick bowl after my first mouthful of food at tea time. I then got a look when I answered in the negative to the question ‘Have you had any anti-sickness today?’. I had felt a teeny bit ropy at lunch but it passed and I was able to carry on with my watercress bap so I thought I’d give the tablets a miss.

So back to the PD –

the chance of infection does increase with the use of PD as compared to the use of a neck line. The glucose rich fluid and its warm temperature is kinda a holiday heaven for bacteria. Infections however are a risk with any line and the antibiotic line lock used in the renal line reduces the infection rate by 80%, these locks aren’t used with Hickman or PICC lines so by that comparison they would also have a greater incidence of infection and I wouldn’t hesitate at having one of them. The glucose fluid isn’t as sweet as the one previously used

baths are out as sitting in dirty water isn’t good for the cleanliness of the line. Some people do have very shallow baths but where’s the fun in that? Swimming however is not only allowed but encouraged. A waterproof dressing is popped over the exit/entrance site (I can’t decide if it’s where the line comes out or goes in) and then removed and showered down as soon as out of the water. The chemicals in the pool keeping it clear of bacteria – but what about other people’s wee?

the line itself is inserted under either general or local anaesthetic. I said that I’d prefer local. It’s not that I’m looking forward to it but I can’t say I’d be head of the queue to voluntarily have any type of line fitted. I’m okay when it’s happening but get a tad anxious before hand – more the thought than anything. However with the local there’s the added bonus of IV tranquiliser which will be a first and I understand that general generally carries more complications than the procedures it’s used for

PD is only recommended for five years. Someone has been having it for 12 but this has been his choice and he is aware of the recommendations. Apparently it came to light that it can make things inside squishy and more prone to infection after a certain time so a time period had to be be put on it and it was five years

if the line gets infected then it’s a case of antibiotics, removal of the line and then a new one can be put in approximately six weeks later

and the final consideration is storage. A 30 day supply of the bags of fluid amount to about 6′ x 4′ x 4′. B has suggested they go in the garage which would be acceptable or a shed will be provided to go in the garden. The only thing being that if the weather was really cold a week’s supply would need to be brought into the house as the machine doesn’t like cold fluid. B is also now wondering if we can get two weeks’ worth delivered direct to wherever we go on holiday as he doesn’t think there’d be room in the car for us three, out luggage and the boxes. It has been suggested that he just stick a trailer on the back of the car – not by me – and that went down like a lead balloon

So the nurse has added me to the list and I’ll wait to hear about getting the line put in and then once it has settled and healed round the fuzzy bits that secure it I’ll spend up to a week being showed at the hospital how to do it both with the machine and manually.

I can’t wait, I’m already thinking ‘Will I sleep tonight?’ knowing that I have to get up early in the morning. I’d need to call into the Blood Day Unit for blood tests as required whereas these are taken on dialysis now but that’s no hardship and I know that if my haemoglobin was 8.0 as it was on Saturday I’d get some blood that day, on renal however it was reviewed by a doctor and I may or may not get some tomorrow depending on what they say then. (They don’t routinely transfuse they tend to try stimulating the body’s production – which doesn’t provide the nice quick fix of getting some fresh HB rich blood.) The HB level certainly explained why I felt so listless on Saturday morning even after a nap. I didn’t do much else for the rest of the day but I have felt less tired yesterday and today – maybe because I knew so haven’t pushed doing anything but did manage to go for a walk with B and Bud. My platelets had also come down to 101 and my neutrophils were 1.6. B was a tad worried that my counts had gone down instead of continuing the upward trend.

Yesterday I had a couple of low grade temperature readings 37.6 degrees celsius (99.68 fahrenheit) and 37.4 degrees celsius (99.32 fahrenheit) from morning through to afternoon but by tea time it had settled back to 37.0 degrees celsius (98.6 fahrenheit) and it’s been fine today. Where my line goes in/comes out the site has been a little red but I had it swabbed two weeks ago and nothing showed up and it’s not changed since.

Hopefully I’ll get a couple of units of blood tomorrow and be full of beans by Wednesday.

Oh, and when I said Bud was feeling better – he is but it’s done nothing for the odour he’s been producing – we’re lucky it hasn’t made the paint peel.