Day + 28
WBC 2.5, HGB 105, PLT 154, ANC 1260
Quote of the day:
"STRENGTH IS NOTHING MORE THAN ENDURING LIFE - TO BE ABLE TO SURVIVE THE HEARTACHES AND AGONIES WE GO THROUGH WITH OUR HEADS HELD HIGH. SOMETIMES JUST WALKING THROUGH ADVERSITY TO GET TO THE OTHER SIDE IS A SIGN OF STRENGTH."
-Sylvia Browne
Unfortunately, I did not win the coin toss.....so if I continue to be part of the study, I will receive no further treatment, unless I have a reoccurance of disease.
Currently, I am exploring my options. I am looking at the possibility of sourcing out the Rituxan & paying for it myself. I have already received Rituxan as part of all my previous chemo treatments, with the exception of the high dose chemo prior to STC. These treatments are standard of care & covered by the goverment.
The Rituxan as a "maintenance treatment" is currently not covered by the government for my type of Large Diffuse B Cell Non Hodgkins Lymphoma, because the trial needs to be completed to show that Rituxan is effective in decreasing reoccurance of disease after SCT......before they will agree to cover the costs......& Rituxan is very expensive.
Rituxan did get approved as maintenance therapy for patients with Follicular NHL as per this news article:
.-- Rituxan(R) doubles overall survival for patients living with common form of blood cancer -->>MISSISSAUGA, ON, Aug. 10, 2006 /CNW/ - Hoffmann-La Roche Limited announced today that Health Canada has approved Rituxan(R) (rituximab) as maintenance therapy for patients with follicular non-Hodgkin's lymphoma (NHL) who have responded to initial treatment. Rituxan was shown in a major study originally presented in December 2005 to increase the length of time from end of initial treatment to complete relapse from 15 to 52 months, more than tripling progression-free survival. Furthermore, the therapy doubles the overall survival (48 per cent) for patients with this form of NHL, compared to standard disease management, which is currently "watch and wait."
Dr. Couban is now handing my case back over to my primary hematologist....Dr. Anderson.
Dr. Anderson is going on holidays for 2-3 weeks, & I am trying to get an appointment with him ASAP to discuss my options.
As part of the study, I will not have any CT, Gallium or PET Scans completed until mid October......I may talk to Dr. A. about moving that up sooner so we know what we are dealing with?....should we do radiation?.....should I definitely pursue taking Rituxan?
I want to feel comfortable with the direction we decide to take next, & I need some input from Dr. Anderson to help me with this.
In the mean time, I have been reading as much as I can on the internet. I may decide, at some point to contact "Best Doctors" again to see what they have to say about Rituxan......I also want opinions on whether I should do Radiation or Not??? If so.....WHEN?
So many questions......??
Once I find out anything further, I will do another update.
Quote of the day:
"STRENGTH IS NOTHING MORE THAN ENDURING LIFE - TO BE ABLE TO SURVIVE THE HEARTACHES AND AGONIES WE GO THROUGH WITH OUR HEADS HELD HIGH. SOMETIMES JUST WALKING THROUGH ADVERSITY TO GET TO THE OTHER SIDE IS A SIGN OF STRENGTH."
-Sylvia Browne
Unfortunately, I did not win the coin toss.....so if I continue to be part of the study, I will receive no further treatment, unless I have a reoccurance of disease.
Currently, I am exploring my options. I am looking at the possibility of sourcing out the Rituxan & paying for it myself. I have already received Rituxan as part of all my previous chemo treatments, with the exception of the high dose chemo prior to STC. These treatments are standard of care & covered by the goverment.
The Rituxan as a "maintenance treatment" is currently not covered by the government for my type of Large Diffuse B Cell Non Hodgkins Lymphoma, because the trial needs to be completed to show that Rituxan is effective in decreasing reoccurance of disease after SCT......before they will agree to cover the costs......& Rituxan is very expensive.
Rituxan did get approved as maintenance therapy for patients with Follicular NHL as per this news article:
.-- Rituxan(R) doubles overall survival for patients living with common form of blood cancer -->>MISSISSAUGA, ON, Aug. 10, 2006 /CNW/ - Hoffmann-La Roche Limited announced today that Health Canada has approved Rituxan(R) (rituximab) as maintenance therapy for patients with follicular non-Hodgkin's lymphoma (NHL) who have responded to initial treatment. Rituxan was shown in a major study originally presented in December 2005 to increase the length of time from end of initial treatment to complete relapse from 15 to 52 months, more than tripling progression-free survival. Furthermore, the therapy doubles the overall survival (48 per cent) for patients with this form of NHL, compared to standard disease management, which is currently "watch and wait."
Dr. Couban is now handing my case back over to my primary hematologist....Dr. Anderson.
Dr. Anderson is going on holidays for 2-3 weeks, & I am trying to get an appointment with him ASAP to discuss my options.
As part of the study, I will not have any CT, Gallium or PET Scans completed until mid October......I may talk to Dr. A. about moving that up sooner so we know what we are dealing with?....should we do radiation?.....should I definitely pursue taking Rituxan?
I want to feel comfortable with the direction we decide to take next, & I need some input from Dr. Anderson to help me with this.
In the mean time, I have been reading as much as I can on the internet. I may decide, at some point to contact "Best Doctors" again to see what they have to say about Rituxan......I also want opinions on whether I should do Radiation or Not??? If so.....WHEN?
So many questions......??
Once I find out anything further, I will do another update.
posted by Angie | 1:13 pm
6 Comments:
Angie,
Sorry to hear about the coin toss but as you have said so many times yourself, things happen for a reason even if you have no idea what that reason is. It feels like it has been a while since I dropped you a line. Dad has decided to sell his house and move into an apartment. I have been spending quite a bit of time over there fixing and painting and all that goes with it. I picked up a cold over the weekend so I won't even try to drop by for a visit until that is over. Been driving around with a small gift in the trunk of the car for you and hope to get it to you sometime.
Take care, continue to be strong, our love to Sue.
Deb and Linda
I came across your blog linked from another site and have spent quite some time reading about your experiences. I sincerely wish you the best of recoveries and hope you have 100% success from your stem cell transplant.
Coin toss,coin schmoss!! That kinda sucks. Oh well - just another obstacle to be overcome. Good thing that's your specialty! There are loads of hidden resources out there and I know that you can find them if anyone can. Let me know if you need me to do anything. Chin up! Sending good vibes. -R.
Sorry to hear your bad news. Stay strong (and I know you will). Sandy
Hi Angie,
Sorry that you lost the toss! But it is still only the flip of a coin. Can't you go ahead and take the drug anyway. If there is a chance of improvemnt even ever so slight, with the approval of your doctor, you should go it on your own. You know your family will help with any burden, Marie and I included.
Also keep in mind the study that was conducted a number of years ago where 800 men and women over the age of 90 were interviewed to find a common element as to their longevity. The high correlation to a positive attitude and on going hope was undeniable. Keep your chin up and continue to do what you are doing.
Graham and Marie
Hi there, Angie ~ I'm about to turn in after a long, long day, but it had been so long since I'd voiced support (despite having monitored every post) I wanted to speak up.
I think you need to contact the internationally reknowned Dr. James Armitage, an expert in lymphoma who's acclaimed for his knowledge of both NHL and HL alike. He's a real guru, and he's enormously responsive. I know from experience, as I witnessed his response to my primary oncologist at the time of my relapse over a holiday weekend. Not only did he get right back to him, but he offered expert feedback on my case and then offered to meet with me personally to discuss treatment options. I swear, this guy's an internationally recognized lymphoma GOD, and if there's anyone who would know about Rituxan's value or place in your treatment, this man would. Google him yourself, as I did after my onc spoke to him on the phone in front of me. Later on my BMT doc, the director of the BMT center at Emory (the best cancer center in southeast America,) referred to Dr. Armitage most respectfully a number of times, referring to him as "one of the foremost lymphoma experts of our time." Well, alrighty then! I could detail his credentials, but you'd get more by googling him. He's based out of the University of Nebraska which is, surprisingly, one of the places in America you turn to when you're in trouble for whatever and learn that it's a great source of knowledge. As a northeastern snob, I had no idea that some of the greatest medical knowledge came out of the University of Nebraska! (I'm shaking my head again as I type this!)
Anyway, I strongly urge you to contact this man, Angie. I can't stress it enough. Dr. James Armitage. I swear, this man's the Poo. (With a capital P!)
Things have really ramped up on my own SCT, so I'm so, so sorry that I'm really late in replying to this post of yours. I sincerely apologize.
Sending you and Sue the biggest of hugs....
Sarah
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