(Beginning of March):
So..I guess I should update this blog then...
I know I'm not winning any awards for keeping people up to date...please forgive me.
Today I start maintenance chemo, I will be getting Carfilzomib 2 days a week, every two weeks..
About 30 days ago I finished 5 months of chemo treatment which was Dexamethasone, Cytoxan and Carfilzomib. Also 30 days ago I had my 5th DLI, this time however it was about 10 times larger than the previous one.
Didn't quite finish writing that post, so here I am March 28th with more information and another attempt to update...
A couple of things I want to mention having just read my last blog entry. Carfilzomib is in fact the new Valcade. The new Revlimid, should I choose to use it, is Pomalidomide, just thought I should sort that out.
I did end up having 5 rounds of treatment because BMT dragged their feet a bit on deciding how to do the DLI. It was decided that we would contact the donor and ask for more fresh cells. I think the main reason for the this was my adverse reaction to the stem cell preservative DMSO many moons ago when I got a DLI in NYC.
The decision to give a much larger amount of T-cells was made by Dr McGuirk because my best hope of longer term survival is GVT (graft versus tumor effect) which is when the T-cells or fighting cells attack the cancer cells in my body. There is a danger of there being too much of a fight between
my cells and the donor cells which is called GVHD (graft versus host disease). This is an age old balance with stem cell transplants, and I feel this is already too much information and you're falling asleep.
Lets just say GVHD kills a lot of people and causes all kinds of problems acute and chronic so it can be just as much of a problem as cancer.
The trial I followed for 2 years was trying very hard to find out how to get GVT without any GVHD. However after 4 DLI's, which were done in the hope of creating GVT, this had not happened and my disease had returned. So with a view of giving a lot more T-cells and hoping to be able to manage a small amount of GVHD (which brings with it GVT) it was deemed a worthwhile risk and the hope of a longer remission.
...and so far no GVHD, so I might get more cells in the future. I've been told the window of when
GVHD can happen is 4-8 weeks post DLI.
So as of today March 31st 2015, I feel pretty good. I tested positive for RSV about 10 days ago but got over it in a couple of weeks (and no pneumonia) which is good for me.
Dr Lipe told me about a new test called 'flow cytometry' which is done to the bone marrow biopsy. It detects 1 in 10,000 cells vs the old test which detected 1 in 1000. So I requested a BMB and the results came back negative which is great! It means I'm in remission (as per the new more sensitive test) and I can continue with my planned Carfilzomib maintenance.
Another continuance...
April 14th
So busy day today, I went into clinic for maintenance and when I saw McGuirk he confirmed what Kristy and I had thought, I have chronic GVHD in my mouth (looks like a rash, feels like sunburn at the moment). To check if it is in my lungs (which is a bigger problem) I did a number of tests, starting with running up a few flights of stairs and checking my HR and O2 in my blood which were both fine. I also had a CT scan of my lungs and then a pulmonary function test (PFT). Both of these tests came back fine, which is a huge relief!
Over the past weeks I've done some running (not much) and been on the trainer in the basement 30 minutes at a time. On chemo days and for a couple of days after I feel too tired to work out but the rest of the time is fine.
So all in all, things are going in the right direction. Hopefully a little GVHD means a longer remission and having 2 weeks between treatments means my strength can continue to improve...which will be helpful as our new baby girl is due in 8 weeks!
Tuesday, April 21, 2015
Saturday, December 20, 2014
Here comes Christmas again...
Hello again,
As usual lots of changes since my last update. That's what happens when one updates only every blue moon...
So, I started my most recent IV chemo because back at the end of August they did a bone marrow biopsy (BMB) and found 70% plasma, this is not good as I think I mentioned...
So I started the Dexamethozone, Carfilzomib and Cytoxan protocol. This had not been tried on a patient who had had a stem cell transplant (SCT) before and has only been designed for patients too old or infirmed to be able to survive a SCT.
After 2 months (2 cycles) of chemo I had another BMB which showed 2% plasma! This is basically remission again which is great. Turns out maybe a little too great in so far as the 70% from 8 weeks earlier must have been a lesion (an isolated spot of myeloma) because it would be highly unlikely for the chemo to be able to reduce the cancer by that much. Multiple Myeloma (MM) is a patchy disease and 'lesions' happen. These are spots where MM have weakened or eaten away the bone. This is how I broke ribs so easily this year. Therefore BMB's can be a little inaccurate when used to give a general idea of how much cancer is generally throughout ones bones. I was told a PET scan would give a more definitive evaluation of what was going on but this was turned down by insurance at the time. Later, after I had started the IV chemo and I pushed again for the PET, it was allowed but at that stage it was too late to be used for the original intent which was in deciding whether or not I needed IV chemo. Having said that the PET was helpful in showing that compared to one done maybe 6 months previously the chemo was helping to slow cancer activity in my left ribs and right humorous, which had been 'hot spots'. Also it was nice to know cancer wasn't everywhere...
So today is day 4 of my 4th and final round of this chemo protocol. I will have my last drugs on Christmas Eve and follow that with week off from chemo drugs which completes the 28 day cycle and 4 months of treatment.
As the treatment has gone on the cumulative effect has made me feel sicker and lets just say I'm glad we are not doing a 5th round!
Fatigue seems to be constant and worried me enough to ask for a cancer marker blood test. All is good, my Kappa light chain (KLC) numbers are "undetectable". It's just that last time I felt so sick it was cancer slowing me down, happily this time its just chemo.
So the next step is another donor lymphocyte infusion (DLI), and then the maintenance drug will be Carfilzomib which is actually the new generation of Revlimid not Velcade as I said a couple of posts ago.
I'm not sure if there is much data on how well this all works, I've asked Dr Koehne at MSK in New York for any data on 'people in my position' from his trial but I have not heard back yet, and I'm not sure if he will have any data anyway as I'm in a pretty small group.
On my week off every month from Cytoxan Carfilzomib I feel pretty good so once I am on just Carfilzomib maintenance which is IV just once every 2 weeks I should feel a lot better as long as it can keep MM at bay.
On a much more positive note, Kristy is pregnant! We are due to welcome Delaney kiddo number 3 in June 2015! We were trying to have another baby before I was diagnosed in 2010 and luckily we asked about banking sperm at that time. This of course is because once I started chemotherapy I was sterile. Since 2010 it has become part of protocol to discuss this at diagnosis and offer the option to bank sperm.
So through much thought and discussion we ended up 'investing' in another baby, through the wonders of IVF! The financial 'investment' was made easier though the Livestrong Foundation as they give financial help to people in our position with cancer. I did not set out in life to be a new dad at 51 but I also did not plan on terminal cancer at 46. Having said that I was never much of a planner as some of you may know... Having said all that, our family is not just about me and it's not just about now. We looked into the future and without knowing any facts about that - made the best plans for our whole family. As best as one can at this time anyway.
If this journey has taught me anything it is that life is fast and can be fleeting so get as much of it as you can and enjoy it as much as you can.
Happy Christmas!
As usual lots of changes since my last update. That's what happens when one updates only every blue moon...
So, I started my most recent IV chemo because back at the end of August they did a bone marrow biopsy (BMB) and found 70% plasma, this is not good as I think I mentioned...
So I started the Dexamethozone, Carfilzomib and Cytoxan protocol. This had not been tried on a patient who had had a stem cell transplant (SCT) before and has only been designed for patients too old or infirmed to be able to survive a SCT.
After 2 months (2 cycles) of chemo I had another BMB which showed 2% plasma! This is basically remission again which is great. Turns out maybe a little too great in so far as the 70% from 8 weeks earlier must have been a lesion (an isolated spot of myeloma) because it would be highly unlikely for the chemo to be able to reduce the cancer by that much. Multiple Myeloma (MM) is a patchy disease and 'lesions' happen. These are spots where MM have weakened or eaten away the bone. This is how I broke ribs so easily this year. Therefore BMB's can be a little inaccurate when used to give a general idea of how much cancer is generally throughout ones bones. I was told a PET scan would give a more definitive evaluation of what was going on but this was turned down by insurance at the time. Later, after I had started the IV chemo and I pushed again for the PET, it was allowed but at that stage it was too late to be used for the original intent which was in deciding whether or not I needed IV chemo. Having said that the PET was helpful in showing that compared to one done maybe 6 months previously the chemo was helping to slow cancer activity in my left ribs and right humorous, which had been 'hot spots'. Also it was nice to know cancer wasn't everywhere...
So today is day 4 of my 4th and final round of this chemo protocol. I will have my last drugs on Christmas Eve and follow that with week off from chemo drugs which completes the 28 day cycle and 4 months of treatment.
As the treatment has gone on the cumulative effect has made me feel sicker and lets just say I'm glad we are not doing a 5th round!
Fatigue seems to be constant and worried me enough to ask for a cancer marker blood test. All is good, my Kappa light chain (KLC) numbers are "undetectable". It's just that last time I felt so sick it was cancer slowing me down, happily this time its just chemo.
So the next step is another donor lymphocyte infusion (DLI), and then the maintenance drug will be Carfilzomib which is actually the new generation of Revlimid not Velcade as I said a couple of posts ago.
I'm not sure if there is much data on how well this all works, I've asked Dr Koehne at MSK in New York for any data on 'people in my position' from his trial but I have not heard back yet, and I'm not sure if he will have any data anyway as I'm in a pretty small group.
On my week off every month from Cytoxan Carfilzomib I feel pretty good so once I am on just Carfilzomib maintenance which is IV just once every 2 weeks I should feel a lot better as long as it can keep MM at bay.
On a much more positive note, Kristy is pregnant! We are due to welcome Delaney kiddo number 3 in June 2015! We were trying to have another baby before I was diagnosed in 2010 and luckily we asked about banking sperm at that time. This of course is because once I started chemotherapy I was sterile. Since 2010 it has become part of protocol to discuss this at diagnosis and offer the option to bank sperm.
So through much thought and discussion we ended up 'investing' in another baby, through the wonders of IVF! The financial 'investment' was made easier though the Livestrong Foundation as they give financial help to people in our position with cancer. I did not set out in life to be a new dad at 51 but I also did not plan on terminal cancer at 46. Having said that I was never much of a planner as some of you may know... Having said all that, our family is not just about me and it's not just about now. We looked into the future and without knowing any facts about that - made the best plans for our whole family. As best as one can at this time anyway.
If this journey has taught me anything it is that life is fast and can be fleeting so get as much of it as you can and enjoy it as much as you can.
Happy Christmas!
Wednesday, October 1, 2014
I'm back - sorry for the interruption
Apologies for the last entry I was disappointed and angry to be sick again. However I have had time to brush myself off and am back to my 'don't give an inch' mentality. I still feel good, maybe thanks to steroids but whatever it is I'll take it.
So I'm on my third week of chemo. Cytoxan, Carfilzomib and Dexomethozone and it seems to be going well. I had a port placed and after a few days of soreness it is fine, a necessity as my veins are a little difficult to find these days. I was afraid Cytoxan would knock me down as it did in the past but as this is a lower dose it isn't bad.
So life goes on and I am feeling great and will continue to do as much as I can for as long as I can. My ribs are almost better and all the other pains and aches are subsiding so I plan to run and ride in the near future...not like before but I will be wearing my HR monitor and driving it up as is possible (safely).
So I may see you on the road...
So I'm on my third week of chemo. Cytoxan, Carfilzomib and Dexomethozone and it seems to be going well. I had a port placed and after a few days of soreness it is fine, a necessity as my veins are a little difficult to find these days. I was afraid Cytoxan would knock me down as it did in the past but as this is a lower dose it isn't bad.
So life goes on and I am feeling great and will continue to do as much as I can for as long as I can. My ribs are almost better and all the other pains and aches are subsiding so I plan to run and ride in the near future...not like before but I will be wearing my HR monitor and driving it up as is possible (safely).
So I may see you on the road...
Wednesday, September 17, 2014
Treatment again
Well, here I am again, sitting in a treatment room waiting for some IV chemo...
Lots of things have happened since my last entry, but I was kind of enjoying ignoring them and just getting on with things.
However, for posterity and to bring this blog to a close I will up date the last week or so.
I had my two year post transplant work up last week, blood work, 24 hour urine, bone marrow biopsy (BMB). The bone marrow took at least 45 mins, this was due in part to there being lots of holes in the bone (kind of like Swiss cheese) so it took some time to get a good sample. That should have been a hint, plus a week or so ago I fractured two ribs while twisting awkwardly opening a door!
On Monday last I had a meeting with Dr McGuirk and the first thing he said when he arrived was that we needed to get Kristy on speaker phone... Never a good start! He had the preliminary results of the BMB and there was 70% plasma in the marrow where there should have none. Multiple myeloma causes over production of plasma cells which takes over causing all kinds of problems one being bone weakness.
So the plan is to go on an aggressive chemotherapy protocol for 6 months and see if we can get control again. The drugs will be outpatient which is good but will make me feel crappy which is bad. I've had Cytoxin before and am not a fan. Carfilzomib is the new generation of Velcade and have not had the pleasure. Dexamethasone should help with my chore list...
So as things progress with my treatment I may not post again, never say never but I'm not sure why I'm doing this anymore. The first time round on a roller coaster is fun with all the ups and downs but the second or third doesn't get any more interesting, so I might just spare you the blow by blow...
Lots of things have happened since my last entry, but I was kind of enjoying ignoring them and just getting on with things.
However, for posterity and to bring this blog to a close I will up date the last week or so.
I had my two year post transplant work up last week, blood work, 24 hour urine, bone marrow biopsy (BMB). The bone marrow took at least 45 mins, this was due in part to there being lots of holes in the bone (kind of like Swiss cheese) so it took some time to get a good sample. That should have been a hint, plus a week or so ago I fractured two ribs while twisting awkwardly opening a door!
On Monday last I had a meeting with Dr McGuirk and the first thing he said when he arrived was that we needed to get Kristy on speaker phone... Never a good start! He had the preliminary results of the BMB and there was 70% plasma in the marrow where there should have none. Multiple myeloma causes over production of plasma cells which takes over causing all kinds of problems one being bone weakness.
So the plan is to go on an aggressive chemotherapy protocol for 6 months and see if we can get control again. The drugs will be outpatient which is good but will make me feel crappy which is bad. I've had Cytoxin before and am not a fan. Carfilzomib is the new generation of Velcade and have not had the pleasure. Dexamethasone should help with my chore list...
So as things progress with my treatment I may not post again, never say never but I'm not sure why I'm doing this anymore. The first time round on a roller coaster is fun with all the ups and downs but the second or third doesn't get any more interesting, so I might just spare you the blow by blow...
Wednesday, May 14, 2014
Remission once more..
Okay, so the title says it all but just for the record here are the details: Test results from May 13th are as follows WBC 4, Creatinine 2.13, KLC 10, Lambda 7 so the all important ratio between kappa and lambda is 1.3 and normal range is 0.26 - 1.65. And yes I am pleased to say that means I'm back in full remission just in time for my next DLI next week. All my rib problems are healing and the only issue I really have at the moment in fatigue from taking Revlimid. Good news!
Okay so I jumped the gun a little :-( , it turns out after checking with my doctor I am not in remission. I am in 'stringent control', so I am a little bummed as this does not sound as sexy as 'remission' but I hope that remission is still in my future.
Okay so I jumped the gun a little :-( , it turns out after checking with my doctor I am not in remission. I am in 'stringent control', so I am a little bummed as this does not sound as sexy as 'remission' but I hope that remission is still in my future.
Tuesday, April 15, 2014
Quick update..
Radiology Oncology said they could radiate the Clivus and that there would be minimal acute side effects. Dr Mitchell thought that the facial numbness was a direct symptom as the nerve affected runs by the Clivus, because the numbness has gone the problem was being controlled by the chemo and DLI. Therefore radiation was not immediately needed and we can watch and wait for a while.
Kappa light chain numbers came down nicely in one week from 35 to 12! So I'm hopefully that before long I'll be in remission again. More KLC numbers tomorrow...
Kappa light chain numbers came down nicely in one week from 35 to 12! So I'm hopefully that before long I'll be in remission again. More KLC numbers tomorrow...
Friday, April 4, 2014
Yes it's been a while...
Well lots of things have happened since New York and I have been slow to write them down for a variety of reasons. I managed to write an update last week but also managed to delete it somehow as well!
So, I got the DLI and I'm also taking Revlimid, they have changed the dose twice so now I take 10mg per day. I will also be getting DLI's every 3 months.
I had a PET scan and they found myeloma in lots of bones including both humorus's, left scapula and ribs. They also did a head MRI and found some myeloma at the top of my spine/bottom of my skull, the specific area is called the Clivus. The lesions are I believe small to medium and too scattered to radiate however the Clivus is in an important place so today I am consulting the radiology oncology dept to see if it's a good idea to use radiation to stop any further damage there.
At their highest my kappa light chains were 57.75 and last Tuesday March 25th they came down to 44. That was 4 weeks post DLI and 2 weeks after starting Revlimid. On April 1st KLC was 35 so it is headed in the right direction!
I have been breaking/damaging ribs at quite a rate, three in the last few months. I also managed to get pneumonia in both lungs, because coughing with a broken rib hurt! But right now I feel fine other than a few bumps.
I had my CD4 count (measurement of my immune system) checked 4/1 and it had gone up from 170's to 254 which is great and means I can stop one of my most disgusting meds Mepron. It also means the last DLI worked and will help me catch less viruses.
So my next step is to hopefully get the KLC back down to normal. I have always been 100% donor which is kind of confusing (even though the reasons have been explained to me) and the last BMB (bone marrow biopsy) was clear. So hopefully my marrow stays clean for long enough for me to reduce the KLC to normal.
I noticed last night neuropathy is back, just in my feet - but I hadn't missed it. I guess it means the drugs are working.
So, I got the DLI and I'm also taking Revlimid, they have changed the dose twice so now I take 10mg per day. I will also be getting DLI's every 3 months.
I had a PET scan and they found myeloma in lots of bones including both humorus's, left scapula and ribs. They also did a head MRI and found some myeloma at the top of my spine/bottom of my skull, the specific area is called the Clivus. The lesions are I believe small to medium and too scattered to radiate however the Clivus is in an important place so today I am consulting the radiology oncology dept to see if it's a good idea to use radiation to stop any further damage there.
At their highest my kappa light chains were 57.75 and last Tuesday March 25th they came down to 44. That was 4 weeks post DLI and 2 weeks after starting Revlimid. On April 1st KLC was 35 so it is headed in the right direction!
I have been breaking/damaging ribs at quite a rate, three in the last few months. I also managed to get pneumonia in both lungs, because coughing with a broken rib hurt! But right now I feel fine other than a few bumps.
I had my CD4 count (measurement of my immune system) checked 4/1 and it had gone up from 170's to 254 which is great and means I can stop one of my most disgusting meds Mepron. It also means the last DLI worked and will help me catch less viruses.
So my next step is to hopefully get the KLC back down to normal. I have always been 100% donor which is kind of confusing (even though the reasons have been explained to me) and the last BMB (bone marrow biopsy) was clear. So hopefully my marrow stays clean for long enough for me to reduce the KLC to normal.
I noticed last night neuropathy is back, just in my feet - but I hadn't missed it. I guess it means the drugs are working.
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