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.
Tuesday, August 31, 2010
Friday, August 27, 2010
8.27.10 Friday Visit
Today was fun, John picked me up and took me for chemo today, allowing Kristy time with kids and family. It was fun to hangout and talk biking, life and...well I think that was it actually. The conversation is pretty much the same, just the backdrop changes. We weren't sitting on our bikes somewhere around 199th Street or over at his car lot, but it was still just as good to 'shoot the breeze'.
Good news, my nurse got my IV in first time, even though I have rhino skin.
Also I have been having flank/kidney pain over the last few days so was expecting the lab results to show there was a continuing negative progression. I was pretty surprised to see the test come back at a Creatinine level of 1.71! This did not surprise the Phamacist, it is what they expected and what I'd been led to expect as well - had I not been having pain. I guess it was good pain, and I can dig good pain!
My Revlimid arrived this morning and I start it today. The phamacist said he wouldn't be surprised if given improved kidney function we could review the dose and up it from 10 to 25mg pretty soon!
So again all in all a good visit, with encouraging information and time to hangout and chat with a good friend.
Good news, my nurse got my IV in first time, even though I have rhino skin.
Also I have been having flank/kidney pain over the last few days so was expecting the lab results to show there was a continuing negative progression. I was pretty surprised to see the test come back at a Creatinine level of 1.71! This did not surprise the Phamacist, it is what they expected and what I'd been led to expect as well - had I not been having pain. I guess it was good pain, and I can dig good pain!
My Revlimid arrived this morning and I start it today. The phamacist said he wouldn't be surprised if given improved kidney function we could review the dose and up it from 10 to 25mg pretty soon!
So again all in all a good visit, with encouraging information and time to hangout and chat with a good friend.
Tuesday, August 24, 2010
2nd Low dose chemo appt.
8.23.10 So it turns out I'm difficult...who knew! Well at least my veins are, the nurse tried twice to find one to no avail. So I asked if nurse Kristy could have a go before we bothered anyone else. She got it first time...go Kristy!
So although we didn't have a doctors visit Dr McGuirk came by and told us they are going to add a med to my current list. He handed us a paper from a brand new completed study from Boston with good results in getting people to the transplant stage. The stat was 100% for getting people into a position for transplant. They are checking that it is as effective when the patient has reduced kidney function (like me). But they seem to have their finger on the pulse as far as looking to the latest treatment which is very encouraging.
So blood has been taken and I will be very interested to see the Creatinine level.
In the next few days they will be adding Revlimid to Velcade both which are chemo drugs. They weren't sure about how or if to introduce this into my meds before they found this new study. I think the worry was kidney function which with this new study has been taken away for now.
Okay so jump to 6.30am Tuesday morning and here we are:
So the Creatinine went up a little 1.94 which was a pity but they have decided to go with Revlimid at 10mg instead of the standard 25mg. This should mean it goes easy on my Platelet count, 25 might be too much with a 'not too healthy' set of kidneys which would drive down the platelet count.
Bugger, I hear James waking....will come back to this later, 6.40am - that's a lay in for him!
1pm...
So I filled out lots of paperwork to get the Revlimid which should arrive end of this week. From there they will juggle that in with the Velcade and Dex so they all end together so I have a week off drugs before the 2nd session...if that makes any sense.
BTW: I have been told by my wife that my grammer, well isn't great...she's so lovely. Well it won't be changing anytime soon so please enjoy it as a quirkiness from the old country, we all speak/write like this there...alegedly.
The Dex gave me a little insomnia so was a slow out of the blocks this morning. Took the kids to the Library early in case my 'comedown' off the steroid is as tiring as Friday.
Nothing else, except to say we felt encouraged by our visit yesterday.
So although we didn't have a doctors visit Dr McGuirk came by and told us they are going to add a med to my current list. He handed us a paper from a brand new completed study from Boston with good results in getting people to the transplant stage. The stat was 100% for getting people into a position for transplant. They are checking that it is as effective when the patient has reduced kidney function (like me). But they seem to have their finger on the pulse as far as looking to the latest treatment which is very encouraging.
So blood has been taken and I will be very interested to see the Creatinine level.
In the next few days they will be adding Revlimid to Velcade both which are chemo drugs. They weren't sure about how or if to introduce this into my meds before they found this new study. I think the worry was kidney function which with this new study has been taken away for now.
Okay so jump to 6.30am Tuesday morning and here we are:
So the Creatinine went up a little 1.94 which was a pity but they have decided to go with Revlimid at 10mg instead of the standard 25mg. This should mean it goes easy on my Platelet count, 25 might be too much with a 'not too healthy' set of kidneys which would drive down the platelet count.
Bugger, I hear James waking....will come back to this later, 6.40am - that's a lay in for him!
1pm...
So I filled out lots of paperwork to get the Revlimid which should arrive end of this week. From there they will juggle that in with the Velcade and Dex so they all end together so I have a week off drugs before the 2nd session...if that makes any sense.
BTW: I have been told by my wife that my grammer, well isn't great...she's so lovely. Well it won't be changing anytime soon so please enjoy it as a quirkiness from the old country, we all speak/write like this there...alegedly.
The Dex gave me a little insomnia so was a slow out of the blocks this morning. Took the kids to the Library early in case my 'comedown' off the steroid is as tiring as Friday.
Nothing else, except to say we felt encouraged by our visit yesterday.
Saturday, August 21, 2010
1st low dose Chemo
8.20.10 Okay I thought my visit would be a blood test wait for the results then a quick 15 min. chemo then home, 1.5 hrs. Well it turned out to take about 5 hours.
Kristy came with me for my first one and that worked out really well as we had a meeting with another one of 4 BMT (Blood Marrow Transplant) docs. Dr McGurk, he is head of dept and a really nice guy. He also knows Kristy from her day job and was sad to meet her in 'his' dept. We met with him for about an hour we found out because of a DNA test I have a chromosome 13 which doesn't give you any particular illness but in my case having MM brings percentages down by 20% for a good prognosis. And he was looking at a 60% chance of long term remission before, so that comes down to 40%. That having been said all this data is made up of MM patients who are much older than me and the low dose chemo Velcade that they are using now and having better results with doesn't figure into those stats. So the stats don't worry me that much. Getting down the cell level (which I listen a little blankly to) in hard to explain but normally when you get MM the errant plasma attacks two parts of your DNA 'light chains' and 'heavy chains', I have problems only with 'light chains'. Which as luck would have it slightly worse.....statistically.
More information yesterday was that the 6 weeks of low dose chemo we were told to expect is unusually short and standard is 9-12 weeks. So everything is possibly pushed back another 6weeks making the total low dose period 3 months.
So at the end of the day Kristy felt a little discouraged which I can understand, it's hard to look at 40% even though it is most probably inaccurate. It has not discouraged me in the least, I feel at this point like an abnormality in this game/race fight whatever way you want to look at it. I'm younger, fitter and am positive, and that has got to help boost those bloody stats!
So on the drug side effects Dexamethasone, it is a steroid which they mix with an anti nausea, this takes 15 minutes and goes in IV before the Velcade. The Velcade is only a 3ml (Approx.) syringe and is pushed in in about 5 seconds. Dex was supposed to stop me sleeping but I slept till 4.30 - which is only 30 or 45 minutes different from normal which was great! They say that I may have mood swings and a short temper....Kristy can let you know if that happens. With Valcade they said nausea vomiting and neuropathy in hands and feet and sure enough at about 9pm last night my toes were numb. No nausea by I did take an anti nausea pill before sitting down to a wonderful meal at Bob & Mary Lynn's complete with my favorite coconut ice cream - homemade!
Okay one more negative before the positive. MM has attacked my Kidneys which are still only working at about 50%, it has also affected my bones and they have found one of my vertebrae T8 or 9 has a compression fracture. They say this is pretty typical in MM suffers but also could not conclusively connect it to MM so I could have done this along while ago (maybe years). Right now it give little of no pain so he said no lifting heavy weights and keep an eye on it.
Positive now: This morning when I woke up having slept 5.5 hours which is longer that the usual 3 then pee, all though the night. I checked my resting HR which was 60 way down from the 82 it has been and the neuropathy in my toes has disappeared! So hopefully the drugs are having some effect on my kidneys too, my Creatinine level (which shows kidney function) is 1.8 and back in Feb. was .8 (which is a normal reading and something I really hope I see .8 again. So we'll see!
A quick note to all who have contacted me and are sending good thoughts and prayers my way. Thank you, you have no idea how much it helps.
Kristy came with me for my first one and that worked out really well as we had a meeting with another one of 4 BMT (Blood Marrow Transplant) docs. Dr McGurk, he is head of dept and a really nice guy. He also knows Kristy from her day job and was sad to meet her in 'his' dept. We met with him for about an hour we found out because of a DNA test I have a chromosome 13 which doesn't give you any particular illness but in my case having MM brings percentages down by 20% for a good prognosis. And he was looking at a 60% chance of long term remission before, so that comes down to 40%. That having been said all this data is made up of MM patients who are much older than me and the low dose chemo Velcade that they are using now and having better results with doesn't figure into those stats. So the stats don't worry me that much. Getting down the cell level (which I listen a little blankly to) in hard to explain but normally when you get MM the errant plasma attacks two parts of your DNA 'light chains' and 'heavy chains', I have problems only with 'light chains'. Which as luck would have it slightly worse.....statistically.
More information yesterday was that the 6 weeks of low dose chemo we were told to expect is unusually short and standard is 9-12 weeks. So everything is possibly pushed back another 6weeks making the total low dose period 3 months.
So at the end of the day Kristy felt a little discouraged which I can understand, it's hard to look at 40% even though it is most probably inaccurate. It has not discouraged me in the least, I feel at this point like an abnormality in this game/race fight whatever way you want to look at it. I'm younger, fitter and am positive, and that has got to help boost those bloody stats!
So on the drug side effects Dexamethasone, it is a steroid which they mix with an anti nausea, this takes 15 minutes and goes in IV before the Velcade. The Velcade is only a 3ml (Approx.) syringe and is pushed in in about 5 seconds. Dex was supposed to stop me sleeping but I slept till 4.30 - which is only 30 or 45 minutes different from normal which was great! They say that I may have mood swings and a short temper....Kristy can let you know if that happens. With Valcade they said nausea vomiting and neuropathy in hands and feet and sure enough at about 9pm last night my toes were numb. No nausea by I did take an anti nausea pill before sitting down to a wonderful meal at Bob & Mary Lynn's complete with my favorite coconut ice cream - homemade!
Okay one more negative before the positive. MM has attacked my Kidneys which are still only working at about 50%, it has also affected my bones and they have found one of my vertebrae T8 or 9 has a compression fracture. They say this is pretty typical in MM suffers but also could not conclusively connect it to MM so I could have done this along while ago (maybe years). Right now it give little of no pain so he said no lifting heavy weights and keep an eye on it.
Positive now: This morning when I woke up having slept 5.5 hours which is longer that the usual 3 then pee, all though the night. I checked my resting HR which was 60 way down from the 82 it has been and the neuropathy in my toes has disappeared! So hopefully the drugs are having some effect on my kidneys too, my Creatinine level (which shows kidney function) is 1.8 and back in Feb. was .8 (which is a normal reading and something I really hope I see .8 again. So we'll see!
A quick note to all who have contacted me and are sending good thoughts and prayers my way. Thank you, you have no idea how much it helps.
Thursday, August 19, 2010
Eliptical
I feel good apart from some killer indigestion. Good enough to get on the elliptical in the basement for 20 minutes. Kept my HR at a very conservative 140-145. It was a far cry from my normal 2 hours and I was going much much slower than usual. I hope I can keep this up during the 6 weeks of low dose chemo. I will be checking with my doctor. As long as it helps me I'll do it, I really miss working out.
Tuesday, August 17, 2010
First Post
This is not the catchiest of blog titles and certainly not one I would have chosen for myself or in fact anyone, but here we are.
So, a very quick background: About 7 weeks ago I felt pretty strong fatigue and then 3 weeks ago nausea with a 10 lb weight loss. I eventually went to the doctor, had lots of tests and found that my kidneys weren't working very well. Through a kidney biopsy and then a bone marrow biopsy we found out last Friday that the confirmed diagnosis is Multiple Myeloma. This is a cancer in the bone marrow that affects my plasma cells and therefore produces lots of extra proteins.
Monday morning 8.16.10 at 9am Kristy and I met the doctor and team that will guide me through my treatment. As fate would have it our doctor, Dr. Ganguly, works along side Kristy sometimes in the Transplant ICU, so he was kind of surprised to see her out of scrubs.
So after a 3 hr meeting and way too much information we were done for the day.
This Friday 8.20.10 I start my treatment: two days per week of low-dose chemo for 6-9 weeks depending on my body's response, then some high dose chemo for a short period of time and then a bone marrow transplant.
So, a very quick background: About 7 weeks ago I felt pretty strong fatigue and then 3 weeks ago nausea with a 10 lb weight loss. I eventually went to the doctor, had lots of tests and found that my kidneys weren't working very well. Through a kidney biopsy and then a bone marrow biopsy we found out last Friday that the confirmed diagnosis is Multiple Myeloma. This is a cancer in the bone marrow that affects my plasma cells and therefore produces lots of extra proteins.
Monday morning 8.16.10 at 9am Kristy and I met the doctor and team that will guide me through my treatment. As fate would have it our doctor, Dr. Ganguly, works along side Kristy sometimes in the Transplant ICU, so he was kind of surprised to see her out of scrubs.
So after a 3 hr meeting and way too much information we were done for the day.
This Friday 8.20.10 I start my treatment: two days per week of low-dose chemo for 6-9 weeks depending on my body's response, then some high dose chemo for a short period of time and then a bone marrow transplant.
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