I don't have any experience with that treatment, so I don't' have much to offer there, but will be thinking about you.
I still lovehate this thread.
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
202I have experience with this only because we did multiple consultations and ended up not doing it for my spouse, opted for chemo only because of how effective it ended up being on the lymphoblastic leukemia/lymphoma. I did a lot of researching on it, and Car-T, which unfortunately has few options for T ALL.Gramsci wrote: Mon Feb 05, 2024 10:56 am So, myeloma chemo induction cycle completed without much stress. I’m actually feeling pretty good aside from problems with my taste. No hair loss, gained a bit of weight from the steroids and some temporary fatigue and joint pain.
Next step is a Stem Cell Transplant. Which is both extremely hardcore and anticlimactic.
Anyone have experience with this procedure?
I’m basically having my immune system rebooted to Day Zero. Meaning I’ll have to redo all my childhood vaccinations . A month in isolation in a nice hotel attached to the university hospital then three months of shielding.
Weirdly all this isn’t bothering me that much. Even the likely shortened life span. I kind of had a subconscious “will to death” anyway and now I can spend my retirement set asides on travel and experiences.
We have cancer friends that have had the transplant and it’s a very personalized experience but there’s some huge risks and huge benefits. I don’t want to scare you but hopefully your team has been very straightforward with you
I’m sorry you have to go through with this but very glad you have options. Many thoughts your way
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
203Yeah we’ve been through, it’s a whack but because I’m youngish and otherwise healthy it’s about as manageable risk as possible. It’s still going to suck. There a very small long term risk of a secondary type of another blood cancer. But the likely benefit is a long period of good health and remission.
Luckily I don’t have any overall disease yet. Mostly very mild anemia and some loss of kidney function which has stabilised and improved. Weirdly I’m feeling pretty good since treatment started.
It sounds morbid but even dying of this isn’t the typical “cancer” death. It’s death by infection generally. Obviously none of this is ideal, I’ve had to do some serious mental health reinforcement. Meditation and diving into a secular Buddhist mind space has helped a lot. To be honest my biggest concern was my family’s welfare. Fortunately we’re insured to the eyeballs so if/when I depart this mortal coil everything is sorted. I’d even got Critical Care a couple of years ago never imagining I’d need it… get insured folks.
Luckily I don’t have any overall disease yet. Mostly very mild anemia and some loss of kidney function which has stabilised and improved. Weirdly I’m feeling pretty good since treatment started.
It sounds morbid but even dying of this isn’t the typical “cancer” death. It’s death by infection generally. Obviously none of this is ideal, I’ve had to do some serious mental health reinforcement. Meditation and diving into a secular Buddhist mind space has helped a lot. To be honest my biggest concern was my family’s welfare. Fortunately we’re insured to the eyeballs so if/when I depart this mortal coil everything is sorted. I’d even got Critical Care a couple of years ago never imagining I’d need it… get insured folks.
clocker bob may 30, 2006 wrote:I think the possibility of interbreeding between an earthly species and an extraterrestrial species is as believable as any other explanation for the existence of George W. Bush.
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
204I somehow hadn't seen any of this news historically - very sorry to hear. Glad to read that your stoicism is carrying you through.Gramsci wrote: Tue Feb 06, 2024 2:00 am Yeah we’ve been through, it’s a whack but because I’m youngish and otherwise healthy it’s about as manageable risk as possible. It’s still going to suck. There a very small long term risk of a secondary type of another blood cancer. But the likely benefit is a long period of good health and remission.
Luckily I don’t have any overall disease yet. Mostly very mild anemia and some loss of kidney function which has stabilised and improved. Weirdly I’m feeling pretty good since treatment started.
It sounds morbid but even dying of this isn’t the typical “cancer” death. It’s death by infection generally. Obviously none of this is ideal, I’ve had to do some serious mental health reinforcement. Meditation and diving into a secular Buddhist mind space has helped a lot. To be honest my biggest concern was my family’s welfare. Fortunately we’re insured to the eyeballs so if/when I depart this mortal coil everything is sorted. I’d even got Critical Care a couple of years ago never imagining I’d need it… get insured folks.
Good health fella. Keep going.
at war with bellends
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
205Thanks man. This space is kind of my brain dump. Other than a couple of friends and close family I don’t really discuss the big picture with anyone. Not out of any particular reason other than not really having the energy for sympathy, however well intentioned.A_Man_Who_Tries wrote: Tue Feb 06, 2024 2:03 amI somehow hadn't seen any of this news historically - very sorry to hear. Glad to read that your stoicism is carrying you through.Gramsci wrote: Tue Feb 06, 2024 2:00 am Yeah we’ve been through, it’s a whack but because I’m youngish and otherwise healthy it’s about as manageable risk as possible. It’s still going to suck. There a very small long term risk of a secondary type of another blood cancer. But the likely benefit is a long period of good health and remission.
Luckily I don’t have any overall disease yet. Mostly very mild anemia and some loss of kidney function which has stabilised and improved. Weirdly I’m feeling pretty good since treatment started.
It sounds morbid but even dying of this isn’t the typical “cancer” death. It’s death by infection generally. Obviously none of this is ideal, I’ve had to do some serious mental health reinforcement. Meditation and diving into a secular Buddhist mind space has helped a lot. To be honest my biggest concern was my family’s welfare. Fortunately we’re insured to the eyeballs so if/when I depart this mortal coil everything is sorted. I’d even got Critical Care a couple of years ago never imagining I’d need it… get insured folks.
Good health fella. Keep going.
Stoicism really is the only option in the face of this. I could wallow in self pity, but as I’ve said I’ve been doing a lot of work mentally. I’m a nutshell, under current treatments outcomes I’ll have a lifespan about 15 to 20 years shorter than the average. But anything could happen in that space of time. My only option is to stare this straight in the face and enjoy the time I have. Most of that will be in good health. At the moment the biggest struggle I have is shifting my mind from the usual petty daily nonsense my mind yabbers away about and channelling thoughts into appreciating the present.
clocker bob may 30, 2006 wrote:I think the possibility of interbreeding between an earthly species and an extraterrestrial species is as believable as any other explanation for the existence of George W. Bush.
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
206All the best to you and your family, FM Gramsci.
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
207It may sound trite but there are positives to this kind of devastating diagnosis. It focuses your priorities in life in a way you didn’t think possible. It makes a lot of decisions for you. It made my spouse and I closer in a way I don't think would have ever happened naturally. It has made us both WANT to live, and survive and thrive. (That’s been our mantra). We appreciate small things, and small kindness so much more.
I’m happy treatment is going well and you’re feeling good through it. That’s a good sign!
My spouse just had a 10cm non-cancerous ovarian cyst removed while still doing active maintenance chemo. Just mentioning if anyone has to do a procedure while on treatment. They stopped chemo for 4 weeks, two before and two after. That is the scariest part of the whole ordeal.
Pain management also tricky as chemo is rough on things like your liver so taking a ton of Tylenol isn’t tenable and people also tend to have an opioid tolerance
I’m happy treatment is going well and you’re feeling good through it. That’s a good sign!
My spouse just had a 10cm non-cancerous ovarian cyst removed while still doing active maintenance chemo. Just mentioning if anyone has to do a procedure while on treatment. They stopped chemo for 4 weeks, two before and two after. That is the scariest part of the whole ordeal.
Pain management also tricky as chemo is rough on things like your liver so taking a ton of Tylenol isn’t tenable and people also tend to have an opioid tolerance
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
208Man, that’s tough. I’m glad you’ve found some light in the darkness.TylerDeadPine wrote: Tue Feb 06, 2024 9:13 am It may sound trite but there are positives to this kind of devastating diagnosis. It focuses your priorities in life in a way you didn’t think possible. It makes a lot of decisions for you. It made my spouse and I closer in a way I don't think would have ever happened naturally. It has made us both WANT to live, and survive and thrive. (That’s been our mantra). We appreciate small things, and small kindness so much more.
I’m happy treatment is going well and you’re feeling good through it. That’s a good sign!
My spouse just had a 10cm non-cancerous ovarian cyst removed while still doing active maintenance chemo. Just mentioning if anyone has to do a procedure while on treatment. They stopped chemo for 4 weeks, two before and two after. That is the scariest part of the whole ordeal.
Pain management also tricky as chemo is rough on things like your liver so taking a ton of Tylenol isn’t tenable and people also tend to have an opioid tolerance
It is weird how we go through our life without really understanding the importance of finitude. I know this is morbid to some, but literally everyone here is going to die, not that long from now. I still fight constantly to rewire my brain to a more present focus. It’s really hard, I mean it’s basically what practicing Buddhists are trying to achieve through years of meditation. But even an acknowledgment of the need to shift one’s mind away from its endless jabbering is a massive step. Most people never do this.
And at least I don’t have to worry about retirement
We’re going to the Canary Islands on Friday. I’m going to swim in the Atlantic with my daughters. That is way more than I ever thought I’d deserve.
clocker bob may 30, 2006 wrote:I think the possibility of interbreeding between an earthly species and an extraterrestrial species is as believable as any other explanation for the existence of George W. Bush.
Re: Would y'all mind if we keep asking Cancer to Go Fuck Itself?
210So…. Final Induction treatment done and the results are in… a very high response to treatment with a 90% drop in the Light Chains from the myeloma cells that cause the bad stuff. No issues with any other disease. So it’s six weeks of no more chemo, which was pretty “light” anyway. Then “The Treatment” and the expectation of years of normal good health.
Caveats that this could change but it’s unlikely.
Thanks for all the kind words.
Caveats that this could change but it’s unlikely.
Thanks for all the kind words.
clocker bob may 30, 2006 wrote:I think the possibility of interbreeding between an earthly species and an extraterrestrial species is as believable as any other explanation for the existence of George W. Bush.