Much like the Leafs winning 3 of 4 after an 8 game losing streak... the
OPTIMISM is back! Start planning the parade, there has been some GOOD
news.
Stem cell collection went swimmingly. This was a big step as no collection, no transfer; no transfer, no luck...
I had the day's high, 309 million stem cells per unit, and as such
was able to collect in just over two hours (compared to the average of
two to three days). Based on the attempts to pregnancies ratio, all
other numbers are similarly high. Booyah! I am a manly man!
Anyway, the stem cell collection is done so step one is completed.
Now we just need the radiation to shrink the house guest who will just
not go away a few cm and we are set.
Radiation starts on Monday
and I am looking forward to it. I will be happy to just get rid of some
of these secondary symptoms that are, while not life altering, annoying
to have on a daily basis. The cough, the phlegm, the itching, the
night sweats, the day sweats, the headaches, the fast heartbeat, etc,
etc. I sound like a Nyquil commercial.
Anyway, some positive news so I thought I would share.
Cheers,
Rob
Wednesday, 24 November 2010
Thursday, 18 November 2010
Chemo Round 2 - no, not the same result as Rocky 2
Well, really.
2nd round of chemo finished and off for results I go - CT and Gallium scans. How is the chemo working on my tumor...
RESULTS - No major changes in the tumor.
Well, I have not failed this many tests since first year university. I am hoping that this is very similar to first year Psych and yes, while I blew most of the term quizzes, the exam was worth 70% and by acing that (92%) I actually end up with a decent mark in the class. All thanks to a very nice young lady who had made very detailed notes on the text book and was willing to let me photocopy them.
So... anybody have REALLY good notes from Lymphoma class?
What does this mean...
I have a fairly chemo resistant tumor. The one in my neck seems to have disappeared but the main one in my chest is being stubborn and remains a 7cm x 7cm lump. While I could do more, harsher, chemo treatments (mini-BEAM for example) that may be successful, chances are for me that they probably would not. The goal is to get the mass smaller because if I were to get to ABMT (stem cell transfer) I have a greater long term survival rate if the mass is small (<5cm x 5cm) at the start of the program.
Since chemo is not working, then it is probably time to try something else. I will be doing radiation starting in late November to try and shrink the tumor (80-90% chance of a good response according to my RadOnc [radiation cancer doc]). This will be every day for a month. Woohoo!
Apparently prep for this may require my getting my first tattoo so that they can properly set up the machine each time to radiate the correct area... so whoever has dragon in the tattoo pool is the winner (can you imagine at the beach... "hey, nice dragon holding a sign saying ENTER HERE." "Thanks, I got it to direct my radiation for lymphoma"). Or maybe it will just be a bunch of dots and lines. They were not clear during the meeting.
In the meantime I have gone through the start of the protocol to get my stem cells collected for transfer (now expected to happen in January). This involves chemo (done last week), lots of VERY expensive shots (thank you BMO health plan - $5,500 for each shot of Neuprogen is a lot of cash I would have needed just lying around), and then hopefully collection next week. Very important that the stem cells can be collected so here is hoping that I am a big producer.
That is about it for now.
Summary:
Stem cell collection for next week. Radiation after (assuming collection has been successful) for a month. Home for Christmas (greatly appreciated). Stem cell transfer and extended hospital stay in January. Probably more radiation after that.
Some "preachy" thoughts:
From an actuarial point of view if you are around my age it is more likely that you will use your Long Term Disability coverage than your Life Insurance. What is your coverage? Do you know?
How good is your Health Care coverage? Are you coordinating benefits? Being covered on the last two has saved me a LOT of money - over $35,000 in non OHIP covered medical bills so far.
Finally, life is short... what are you putting off for tomorrow that you really could do today (and yes, I was talking about that report for your boss, so just get it done).
Cheers,
Rob
2nd round of chemo finished and off for results I go - CT and Gallium scans. How is the chemo working on my tumor...
RESULTS - No major changes in the tumor.
Well, I have not failed this many tests since first year university. I am hoping that this is very similar to first year Psych and yes, while I blew most of the term quizzes, the exam was worth 70% and by acing that (92%) I actually end up with a decent mark in the class. All thanks to a very nice young lady who had made very detailed notes on the text book and was willing to let me photocopy them.
So... anybody have REALLY good notes from Lymphoma class?
What does this mean...
I have a fairly chemo resistant tumor. The one in my neck seems to have disappeared but the main one in my chest is being stubborn and remains a 7cm x 7cm lump. While I could do more, harsher, chemo treatments (mini-BEAM for example) that may be successful, chances are for me that they probably would not. The goal is to get the mass smaller because if I were to get to ABMT (stem cell transfer) I have a greater long term survival rate if the mass is small (<5cm x 5cm) at the start of the program.
Since chemo is not working, then it is probably time to try something else. I will be doing radiation starting in late November to try and shrink the tumor (80-90% chance of a good response according to my RadOnc [radiation cancer doc]). This will be every day for a month. Woohoo!
Apparently prep for this may require my getting my first tattoo so that they can properly set up the machine each time to radiate the correct area... so whoever has dragon in the tattoo pool is the winner (can you imagine at the beach... "hey, nice dragon holding a sign saying ENTER HERE." "Thanks, I got it to direct my radiation for lymphoma"). Or maybe it will just be a bunch of dots and lines. They were not clear during the meeting.
In the meantime I have gone through the start of the protocol to get my stem cells collected for transfer (now expected to happen in January). This involves chemo (done last week), lots of VERY expensive shots (thank you BMO health plan - $5,500 for each shot of Neuprogen is a lot of cash I would have needed just lying around), and then hopefully collection next week. Very important that the stem cells can be collected so here is hoping that I am a big producer.
That is about it for now.
Summary:
Stem cell collection for next week. Radiation after (assuming collection has been successful) for a month. Home for Christmas (greatly appreciated). Stem cell transfer and extended hospital stay in January. Probably more radiation after that.
Some "preachy" thoughts:
From an actuarial point of view if you are around my age it is more likely that you will use your Long Term Disability coverage than your Life Insurance. What is your coverage? Do you know?
How good is your Health Care coverage? Are you coordinating benefits? Being covered on the last two has saved me a LOT of money - over $35,000 in non OHIP covered medical bills so far.
Finally, life is short... what are you putting off for tomorrow that you really could do today (and yes, I was talking about that report for your boss, so just get it done).
Cheers,
Rob
Monday, 27 September 2010
But I thought I ordered the fish - confusion on what I got
Okay a quick update as a few things have changed...
Recent pathology came back showing as Non-Hodgkins Lymphoma , more specifically Primary Mediastinal B-cell lymphoma, as opposed to the previous determination that I had Classic Hodgkins Lymphoma.
This means one of three things:
Regardless, treatment and prognosis remain pretty much the same.
I start with Rituxan on Thursday (this is new and is due to the change in diagnosis - Rituxan destroys both normal and malignant B Cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells or dysfunctional B cells - i.e. my new diagnosis). This is a pretty directed treatment and should be of good benefit as I did not have it the first time.
Friday I start the salvage chemo (GDP). This is a harsher chemo bent on rapidly shrinking the tumor.
Both will be long days so thanks to those who suggested (or even better, provided) some films to keep me entertained (not sure about the recommendation for Brian's Song but otherwise okay).
Assuming I can stay on schedule then I look to be through the chemo, stem cell transplant and long boring hospital stay just prior to Christmas. In other words, just after the Leafs are officially eliminated from the playoffs (that was a gimme to you Habs fans out there... don't worry, Price looks like he can take you to the promised land... hahahaha).
Anyway, I am not worried as I know I am good to last through Burke's 5 year plan and the next Leaf's cup.
Okay, that was not as quick as I promised.
All the best,
Rob
Recent pathology came back showing as Non-Hodgkins Lymphoma , more specifically Primary Mediastinal B-cell lymphoma, as opposed to the previous determination that I had Classic Hodgkins Lymphoma.
This means one of three things:
- The original diagnosis was wrong
- The secondary diagnosis is wrong
- I had/have both types of lymphoma
Regardless, treatment and prognosis remain pretty much the same.
I start with Rituxan on Thursday (this is new and is due to the change in diagnosis - Rituxan destroys both normal and malignant B Cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells or dysfunctional B cells - i.e. my new diagnosis). This is a pretty directed treatment and should be of good benefit as I did not have it the first time.
Friday I start the salvage chemo (GDP). This is a harsher chemo bent on rapidly shrinking the tumor.
Both will be long days so thanks to those who suggested (or even better, provided) some films to keep me entertained (not sure about the recommendation for Brian's Song but otherwise okay).
Assuming I can stay on schedule then I look to be through the chemo, stem cell transplant and long boring hospital stay just prior to Christmas. In other words, just after the Leafs are officially eliminated from the playoffs (that was a gimme to you Habs fans out there... don't worry, Price looks like he can take you to the promised land... hahahaha).
Anyway, I am not worried as I know I am good to last through Burke's 5 year plan and the next Leaf's cup.
Okay, that was not as quick as I promised.
All the best,
Rob
Thursday, 16 September 2010
Dude - round 1 of chemo did not work... what is next
So as you are probably
aware, I have lymphoma (and if you did not, my
apologies on the surprise). I was diagnosed in January and have
undergone a full round of chemo ending in July.
I have not been writing everyone in mass updates as it seemed easier
to keep it personal and just reply when asked. Since it now appears
that treatment for this is going to go on for awhile longer, I am
opting for the lazier, mass update approach.
It is looking like I will be doing another round of chemo as the first
one (ABVD) worked well initially but seems to have stopped at some point
after the CT scan was taken at the halfway point. I am basically back
to where I started as the tumor has been growing since then. Current tumor size is about 8
cm by 8 cm.
This next round of chemo is called salvage chemo and is a little harsher
than the first round would have been. I have some stem cells removed
(used to later kick start my immune system) and then I get a big
dosage of chemo and this hopefully kills everything growing in my body
(as an adult there are a few things that we still have growing -
linings in the intestines and throat often suffer, my immune system
will get wiped out as it kills the bone marrow, but for the most part
the damage will be limited to the cancer).
Prior to this beginning, however, I have just had an open lung biopsy
(it sounds worse than it is) on Monday. This is to confirm or deny
the original diagnosis. It will also give me a cool scar to talk
about at parties (although it may require me wearing more open v
necked shirts). A little trouble swallowing (no comments) but
otherwise not too bad.
Anyway, this is where I believe I stand at this moment. Obviously
there are still some questions and the treatment may change depending
on the results of the biopsy (it is possible but unlikely that I have
2 different types of lymphoma and I may just need a different type of
primary chemo for Non-Hodgkins Lymphoma) but I will let you know.
Assuming that the original diagnosis is correct and I undergo the
treatment noted above, I may not be in contact much so I apologize in
advance. I will be also be in hiding a lot as I will be very
susceptible to getting any sickness that anyone else has and will
therefore not be going out much. I will be trying to get caught up on
various television shows and am willing to take must see movie
suggestions.
Anyway, this is just another bump in the road and will delay my return
to hockey but I hope to be back and as slow as ever for Ultimate next
spring.
I have done this in a hurry and may have missed people - I am fine
with you forwarding this as you feel the need.
All the best to everyone,
Rob
apologies on the surprise). I was diagnosed in January and have
undergone a full round of chemo ending in July.
I have not been writing everyone in mass updates as it seemed easier
to keep it personal and just reply when asked. Since it now appears
that treatment for this is going to go on for awhile longer, I am
opting for the lazier, mass update approach.
It is looking like I will be doing another round of chemo as the first
one (ABVD) worked well initially but seems to have stopped at some point
after the CT scan was taken at the halfway point. I am basically back
to where I started as the tumor has been growing since then. Current tumor size is about 8
cm by 8 cm.
This next round of chemo is called salvage chemo and is a little harsher
than the first round would have been. I have some stem cells removed
(used to later kick start my immune system) and then I get a big
dosage of chemo and this hopefully kills everything growing in my body
(as an adult there are a few things that we still have growing -
linings in the intestines and throat often suffer, my immune system
will get wiped out as it kills the bone marrow, but for the most part
the damage will be limited to the cancer).
Prior to this beginning, however, I have just had an open lung biopsy
(it sounds worse than it is) on Monday. This is to confirm or deny
the original diagnosis. It will also give me a cool scar to talk
about at parties (although it may require me wearing more open v
necked shirts). A little trouble swallowing (no comments) but
otherwise not too bad.
Anyway, this is where I believe I stand at this moment. Obviously
there are still some questions and the treatment may change depending
on the results of the biopsy (it is possible but unlikely that I have
2 different types of lymphoma and I may just need a different type of
primary chemo for Non-Hodgkins Lymphoma) but I will let you know.
Assuming that the original diagnosis is correct and I undergo the
treatment noted above, I may not be in contact much so I apologize in
advance. I will be also be in hiding a lot as I will be very
susceptible to getting any sickness that anyone else has and will
therefore not be going out much. I will be trying to get caught up on
various television shows and am willing to take must see movie
suggestions.
Anyway, this is just another bump in the road and will delay my return
to hockey but I hope to be back and as slow as ever for Ultimate next
spring.
I have done this in a hurry and may have missed people - I am fine
with you forwarding this as you feel the need.
All the best to everyone,
Rob
Subscribe to:
Posts (Atom)