Honestly, it is hard at times to be positive about having cancer. I can compartmentalize most of the time and I do. But then when labs come in and you have to face the reality it is hard.
I was diagnosed with Multiple Myeloma in 2005, had the autologous transplant in 2006. I know how lucky I am to even still be here but it doesn’t make it easier. I relapsed in 2010 and actually did great on Revlimid ( aside from it causing severe IBS) for 5 years and then that stopped working. My kappa light chains went up to almost 1100mg/L so pretty high and my ratio was way up at 92mg/L. Velcade or bortezomib is a proteasome inhibitor and worked astonishing well. Within 2 cycles my numbers were almost in the normal range. And that has lasted 4 whole years.
I have no complaints. But the reality is now my numbers are increasing exponentially and I have to deal with it. With my new numbers, I still think it will be January 2021 when I restart Velcade. Since I get my labs every 8 weeks that puts me at the beginning of December, with a doctor visit by the end of the month and then a start date. Velcade means weekly trips to the infusion center. It’s 3 weeks on 1 week off.
It’s depressing but the fact remains I have a cancer that goes in to remission and then re-emerges. It’s never going to disappear. Don’t get me wrong, I am exceedingly fortunate not to be dead from this already, so it’s really just a matter of buck up and deal with it. So many cyber friends with myeloma are long gone with very aggressive myeloma. Mine is always there but so far hasn’t been aggressive.
So here’s the numbers:
Kappa light chains at 382.mg/L up from 239.2mg/L
Lambda light chains at 11.2mg/L up from 10.2mg/L
ratio of the two at 34.11 mg/L up from 23.2
M-protein( SPEP) .4 up from .3
Well, blood doesn’t lie so there it is in black and white. The cancer cells are on the march.
Give me a few days and I’ll be okay with it and be ready to reset. Plus, after thinking about it, I wouldn’t want to start anything till after the holidays so there’s that as well. I’ll see what he thinks when I see him at the end of the month.
9 thoughts on “It’s a Struggle…”
I think you have an exceptionally positive attitude dealing with the cards you’ve been dealt, and there’s nothing wrong with taking time to adjust to news.
Sending you lots of healthy thoughts & good wishes.
Thanks HP, I will get thru it or ?? well, there’s not really a choice unless I want to be dead sooner than later!! (trying to be funny??)
I think you handle it all amazingly well. It must be hard to see those numbers going up. Sending you a hug and some positive thoughts.
Thanks, it is hard but not really unexpected so one has to adjust:) thanks for the positive thoughts!!
I’m sorry you are seeing your numbers go up again and it is so understandable that it is hard to be positive right now. I’m glad to hear there is further treatment available and send you best wishes for success with it.
Yes, I still have lots of treatment options but because Velcade worked so well and it’s been 4 years, usually doctors go back to the previous treatment if it worked! Thanks for the good thoughts.
I have no idea of the costs of treatment so this might be off-target – here in the UK us ordinary people pay our taxes and get health services for free – eventually, or in the case of covid-19, perhaps too late to make a difference. (The rich avoid paying any taxes and get their health care privately without having to wait and have their personal assistant deal with all the boring money issues).
I am rambling…ixazomib? box of tablets to take at home (and keep in a safe – these things are not cheap!) rather than a stab in the tummy at a hospital?
And the missis sends a hug (she is on subcutaneous daratumumab maintenance – and happily NO DEX or anything else).
Hey Miles, nice to hear from you. Pills like Revlimid would be considered a Tier 5 drug and would be enormously expensive on just the Part D plan of Medicare. But getting the Velcade shot at the clinic is covered 100% by medicare so that’s the way to go. Previously, when I was on Revlimid, I was still on my husband’s work insurance so it was covered except for the $30 co-pay. ( Revlimid these days runs about $14,000 a month. BTW, I didn’t know dara had a subcutaneous shot.
Some days are just so, so hard, and if you give in to them on occasion, I think that is a grace we need to allow ourselves. What I do generally experience, thankfully, is that the sadness or fear or anxiety does generally lift, and I am ever so thankful for that. I hope you find it works the same for you, Chris.