Monday 9.20.10 (20.9.10 uk)

Okay so we were sitting waiting in reception for so long this morning (over an hour) that I had a chance to try the Cafe and it was very nice. I had my first coffee in about 3 weeks and I swear it's better than steroids and chemo put together!!! Feeling great!!!

getting my steroids & chemo

My creatinine is 1.75 which is fine. We saw Dr. McGuirk this morning and among other things he said he'd like to see that value come down a bit more with more chemo sessions. He also said that my next appointment won't be until October 1st (the best news of the day, as it means we have a 10 day break from this place!!) when I'll start my 3rd cycle and have labs drawn.  The labs they'll check will include a measure of my free kappa light chains, which is the type of abnormal proteins I have from MM.  This value has to come down to zero before they think I'm in remission and will do another bone marrow biopsy.  This value is directly correlated to the paraproteins (121 prior to treatment, down to 6) they checked a couple of weeks ago, so he expects to see a good response.

a very neat IV by kristy

My white blood cell count is back up to 5.7, which is a normal level so therefore my immune system is still functioning well.  We think the transient dip on Friday was caused by Aredia, which was the IV treatment I got for bone protection.
So all in all a good visit though a slow one at 3 hours.
Okay turns out I'm going in next Friday (they called and added an extra visit) just for the  blood test to show free kappa light chains, I guess it takes a few days to get results and they want everything back by the Oct 1st visit. So we should get a better picture of how I'm responding by the 1st.  We'll keep you all posted.

Friday Sept 17th 2010

John picked me up and we went in for some 11 o'clock chemo. Kristy had again started my IV with one poke - thank you.
When the blood test came back the creatinine had stayed at 1.69 which is great. My white blood cell count is going down which is to be expected. It is 3.4 now and will be going down further during these low dose chemo sessions (normal is 5-10). I need to start taking more precautions as I am now more susceptible to infection. No hugging kissing, being around crowds, shopping anywhere I can pick up a cold or flu. Also my nurse recommended restricting my contact with the kids which is kind of impossible so I'm double checking with my doctor what exactly I can and can't do.

Good News 9.13.10

Well today Kristy started my IV at home, she got it first time of course and I couldn't even feel it! Sophie was very interested in this and watched the whole thing. Got in to KU at 11 but things were running slow so they didn't take blood for about an hour. Results were good the creatinine came down to 1.68 which is my lowest reading so far, very happy about that and surprised. I also had a visit from Dr Aljitawi, he introduced himself and said he knew Kristy and that she was a very good nurse (I was getting that impression lately). He was able to tell me I was reacting well to the chemo after just one session which is encouraging. My urine paraproteins (the "myeloma marker" they're looking at) had come down from 121 to 6....which can't be bad! At least we know the chemo is having a good effect.
So no need for IV fluids today! However Aljitawi mentioned he wanted to give me a medication to help reverse the bone damage/lesions caused by myeloma. The drug is Aredia and is given IV over 4 hours.... If my creatinine was 2.38 like on Friday they'd have to do it over 6! So I guess I should consider myself lucky. So, as seems to happen on a regular basis, I'm here for the best part of a day (7.5 hrs). It's all good though, I need my bones and am very happy to be looking after them.

Was on the bike for 30 mins again this morning. It is so funny to me that I can keep a HR of 130 fine, 140 hurts a bit and 150 is beyond me. My hemoglobin is down to 9.1 from a normal of 13 to 17ish, and so cannot carry the much needed oxygen around my body....do you think now is a good time to ask for some EPO?
So here I am for another 2.5 hrs, I just might order up another hot blanket, flatten out my lazyboy and have a snooze...
Good numbers today...makes me happy.

Starting 2nd session of Chemo Sept 10, 2010.

Kristy came with me this morning and ended up putting my IV in. We actually talked about having a PICC line put in which is a permanent IV so I don't have to get stuck numerous times each time I need an IV. There are issues with PICC lines though, it can cause clots and also get infected. So I put a 3rd option on the table, that they are happy to go with...which is Kristy. I said how about if before we leave home where it's nice and warm she can put the IV in and it's done. They were cool with that and if it starts taking more than one stick as the chemo takes a toll on my veins we can look at the PICC option again.
So the pharmacist came in an chatted for a while about ways to get rid of the nausea and any other questions I had - nice guy. When my labs came back it wasn't a surprise to see my creatinine had gone up to 2.38 which is my highest reading so far and a little concerning if it's going to be a trend. So I got my 2nd litre of IV fluids this week and I'll be drinking and eating as well as my brain will allow until Monday and my next blood test and see if I can make any difference at all, which I kind of doubt. I am not alone in thinking myeloma is the problem and it is still causing disease in my kidneys which any amount of water cannot reverse (though later in the treatment they can regain function) . One of my chemo drugs Revlimid can only be used up to a creatinine value of 2.5 so that is an issue and of course hanging on to my kidneys is always a shadow in the back of my mind.

So I got started on the 2nd session of steroids and chemo IV and also started taking my 1st of 14 days of Revlimid orally. We'll see how much of a steroid 'high' I get tomorrow, I've decided if I have insomnia I'm off to IHOP for breakfast at 4.30 - 5.30 if anyone wants to join me...

Wednesday 9.8.10

Had a blood test yesterday then went down to the Plaza for some coffee and magazines. BMT dept. gave me a call later to say my Creatinine had gone up to 2.17 (from 1.85) so I needed some IV fluids...if possible. So, got fluids all went fine. Last night however I didn't feel great I was fatigued and nauseated with a low grade fever which was a bit of a bugger! I feel a lot better today but I swear I could sleep if I laid on the ground right now!
The nausea is still hanging around on Thursday, so for the past 2-3 days fatigue and nausea have slowed me down. Docs appt and chemo tomorrow.

Week off 9.3.10

This is a week off from chemo, not from coming in here to the hospital. I had a doctors visit at 1:15 and I'm still here at 4:30 and plan to stay until 5:45. I'm hooked up to a saline trip, I'm getting a litre of fluids because of my creatinine level. Which is actually 1.85, so not too bad. I happened to mention how good I felt after the last litre I had so the doctor recommended another. It's kind of a test, if tomorrow I feel 'fit as a fiddle' (which is how I felt last time) I'll be pushing for IV fluids every time I come in. If tomorrow I feel as I did today which was a little blaa I will not be hanging around for fluids on future visits.
I have the added fun of being a hard stick, so getting an IV going today took 6 goes and one wife to get it done (yes, Kristy had to start my IV again). Not the most fun I've had lately. So the bottom line is I'm getting fluid and Kristy will be back in a couple of hours to pick me up.
I would say I'm not a bad patient, I can't say I'm that good either. Especially when it comes to listening to Kristy, she has been telling me for some time now that my left flank pain is probably due to the hematoma caused by the kidney biopsy. Of course when todays doc concurred... I concurred too. And in my head it is much nicer to think of good pain, i.e. nerve endings healing compared to damaged kidneys getting worse. Yet again I have been surprised by how long my day turned out to be, an hour visit became 4.5hrs.

Long day at the office...

I had a chemo apt. at 11am this morning...so why am I back here at 6.35pm!! Well in brief, my Creatinine level went up  so I checked with my nurse before I left that I didn't need IV fluids. We were happy to find out I could hydrate myself orally and she made notes to this effect in my chart. Another doctor looked at my labs a couple of hours later (after my IV had already been taken out) and decided I needed IV fluids....
It Kristy's birthday tomorrow (the 31st) and I wanted to keep it clear so after managing to get babysitting (thank you so much Kathy & Tom!) I drove back in. Kristy was being taken out for a movie and a meal by a friend for her BD. And of course Kristy & Michelle's car broke down and had to miss out on the movie!
To back track just a little, this morning went really well, I was in and out in just under 1.5 hours. My Creatinine did go up to 2.01 which is a bit annoying. Not really the number but because I was led to believe by the phamacist at my last visit that I would continue to trend down from the 1.7. My nurse was not surprised by todays level because of all the drugs I'm taking which are assaulting my body, including my kidneys.
I would say I'm a little pissed (for the Brits & Irish reading this I haven't been drinking, pissed here is mad/angry) at having to reassess my expectation of how my kidneys are doing depending on who I am talking to......
So anyway, chemo done, IV fluids done, kids picked up and put to bed and I'm feeling fine....and tomorrow we have a clear day to enjoy Kristy's birthday with family and maybe an early dinner just the two of us.
I found out some more info about the whole process I want to write here, it's general info but through talking to my nurse today the 'penny dropped' a bit so I understand the process a little better.
Everyone tries an Autologous stemcell transplant with MM first. Part of the reason is because mortality rates during autologous transplant is only 5% compared to 25% if you get someone else's stem cells (allogeneic), and part of the reason is because of the way MM effects the bone marrow (versus leukemia, for example where the only option is allogeneic). So the low dose chemo I am doing now is designed to control the level of cancer in my plasma to such a low level it can be taken out ready to be put back in without anything further being done to it. Then comes 2 days of high dose chemo to kill all the cancer in my body plus all my good and bad bone marrow.  After just one day they put my stem cells back in and wait. At some point I start on long term low dose chemo which we hope keeps the Myeloma in remission, maybe for a long time. They take out enough stem cells for 2 autologous transplants. This may be good enough to keep me well for 20 years if I'm very lucky and realistically maybe not that long.  Decisions for the future would be to look at the other stem cell transplant. High initial risk but with a longer remission time than autologous. And all the time treatments are getting better so who knows. So looking at the creatinine levels is only looking at my kidney function, which will fluctuate throughout my treatment.  We won't really know where my kidney function will level out at until all of this is said and done, but for now I'm not at risk of needing dialysis anytime soon.  Also, the creatinine level is not an indicator of how well the chemo is or isn't working in my body, so that's good to know.