It's a beautiful Spring day today, and I am thrilled to be alive. Not feeling terrific, but not feeling too bad either. If you recall from my previous updates, Myeloma's on the upward move again, so last Dr appointment, we discussed raising the dose level of Dex steroids, Pomalyst, and possibly going back to more frequent Darzalex infusions. But if you know me, I put on the brakes, and opted to up doses one med at a time, so I am able to differentiate which side effects change or increase from which medication.
Some might say I try to be too in control, or self "doctor", but no, I just want to know, in as much as I can, what is happening to my body and why. I'm analytic and a knowledge seeker. Just my nature. So we opted to increase the Dex steroids from 20mg per week to 40mg per week. I took the 40mg this past Sunday for my son 's birthday celebration, as I try to plan my "roid rage" for fun times, or when I can "enjoy" the extreme up, and blast of temporary energy I get. I also plan for the yucky crash, and make sure to not plan anything for several days after taking Dex.
I'm so grateful to be here to celebrate another birthday with my amazing son. Who knew, I would be such a "medical miracle" and still be here 8 years later. Yes my type of IgA myeloma is complex and "high risk" - "aggressive", which requires constant, continual treatment, but lucky me, all the chemo and immunotherapy regimens I been on since diagnosis Dec 30, 2009, have been mostly tolerable, and Have Kept Me Alive.
I continue to be amazed and fascinated with all the variations of Myeloma, the variations of continual or intermittent chemo treatments, the wide variety of side effects, and the crazy life alterations all the myeloma warriors out there experience! Some are completely debilitated by myeloma. Some go years without treatments. Some are diagnosed, treated and go on with life for months, years without meds. Many like me, are on continual, constant myeloma killing meds. Some have extreme painful physical symptoms and side effects. Some blast through treatment after treatment, with little success. Some have extreme bone issues and bone pain. Some are diagnosed, treated, and sadly, their body fails them, and myeloma wins.... Myeloma is an awful cancer, yet so fascinating...
You haven't won with me yet myeloma. You haven't entirely stolen my life.
Look how lucky I am:
I continue to be amazed and fascinated with all the variations of Myeloma, the variations of continual or intermittent chemo treatments, the wide variety of side effects, and the crazy life alterations all the myeloma warriors out there experience! Some are completely debilitated by myeloma. Some go years without treatments. Some are diagnosed, treated and go on with life for months, years without meds. Many like me, are on continual, constant myeloma killing meds. Some have extreme painful physical symptoms and side effects. Some blast through treatment after treatment, with little success. Some have extreme bone issues and bone pain. Some are diagnosed, treated, and sadly, their body fails them, and myeloma wins.... Myeloma is an awful cancer, yet so fascinating...
You haven't won with me yet myeloma. You haven't entirely stolen my life.
Look how lucky I am:
Happy 32nd Bday to my amazing son Scott!
Seriously, one lucky momma here :))
Alissa's big 30th Bday is next!
Whoohoo! I made it!
So my NEXT BIG NEWS will be on my next post, as I had a Bone Density Scan yesterday, and will have my first Pet CT Scan next week. I've had annual Skeletal Scans, and previous Bone Density Scans, but never a Pet CT Scan. I've had an MRI, but I think that was prior to my Myeloma diagnosis. I didn't realize the diet and fasting prep for the Pet Scan, and that they administer radioactive glucose. Hope my body doesn't freak out from that. If you've had one, please let me know how it went for you, and what it feels like.
I have my next Dr appointment and Darzalex infusion April 9, so that's when I should know the results of all these tests, how the 40mg Dex is affecting myeloma's surge, and if I'll need to increase Pomalyst and or Darzalex too. Wouldn't it be nice if the scans show "nothing", and that my existing Lytic Lesions haven't changed, and there are no new ones, or no new bone deterioration. Wouldn't it be super cool if just Dex 40mg sent a message to myeloma, and my numbers plummeted. But who knows. I really don't "worry", I just wonder what my body is doing, why all this happened, and is happening, and what we'll do about any "bad news". It is what it is, and what myeloma does with me, I don't have much control over. But, thankfully, my wonderful doctors and I do have control over the attack plan... Can you even imagine being on cancer treatments for 8 years... so unreal!
Hope all is full of Spring beauty and good things in your lives.
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can!
I was diagnosed with MM in 2015. I had a autologous stem cell transplant in November of 2015. Unfortunately, my numbers are going up. I was taking Ninlaro and 20mg of Dex once a week. They put me on 4mg of Pomalyst and 40mg of Dex once a week to try to get my numbers back down. After about 2 weeks on the Pomalyst, I started feeling off balance. All the time. No fun. Especially since I am an avid hiker. Feeling off balance and hiking places like the Grand Canyon don't mix. I stopped taking the Pomalyst, and am hoping they can find something else, or maybe just put me on a lower dose. I am glad that I found your blog! It's great that you are out there enjoying your life! I think that I am even more motivated now to go do the things I love.
ReplyDeleteHi Scott! Thank you for finding my blog, and leaving a comment about your story. Wow! From your dates above, looks like you got 3 years "remission" or a break with stable numbers. That's so awesome. My SCT was 2010 and I had "remission" with 5mg Revlimid maint for about 18 mos, then we tried no meds, and within several months, MM came back mid 2013, and I've been in continual treatment ever since.
DeleteI would definitely vote to try Pom with a lower dose. As you may have read, I tend to start "less aggressively" then move up doses if need be. I'm currently on Pom 3mg, alternating with 2mg, as I always wind up Neutropenic on higher doses.
And yes for those of us that love nature and the outdoors, myeloma can be a cruel saboteur. I had to drastically change my outdoor lifestyle due to extreme fatigue and surprise lower GI issues. But I do what I can, to be outside and active on nice days :))
Thanks again Scott for checking in, and letting me know you enjoy my stories. I wish you the very best, and ask about lower doses, so you can continue to enjoy the outdoors as you love. Be sure to comment back, when you check in again and let me know how you are doing. Julie
PS- if my cowgirl MM friend Jan, reads this, she has a very inspiring MM treatment story, as well as a VERY active outdoorsy lifestyle. She's my hero for continuing to ride her horses and do all the things she does. And she has additional winning years on us too!! So when you can Scott, get out there, and do what you love to do!
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DeleteHi Julie, I have had several PT scans for lymphoma. The first time I took 1 Ativan. The second time I did not take any meds. Almost freaked out. I had to talk to myself the entire time not to have the tech's get me out of there!! The reason it was harder the second time is because after they lay you on the table they lay a blanket over you, then wrap you up like a papoose. You should not move during the test so I got claustrophobic as a result. I now take 2 Ativan, 1 30 minutes before the test, and 1 when I am taken back for the test. No reaction to the glucose, no pain, and the technicians are very good at Kaiser PC. So the test itself if pretty easy. And then I go home and sleep!! Hope all goes well with you when you have the test. I faithfully read all your blogs and am amazed at your positive, fun, honest writings. Glad you got to celebrate Scott's birthday - I know these moments are even more precious for someone who is fighting or has had cancer. Life is precious!! Keep fighting and I will keep cheering you on and praying for you.
ReplyDeleteHi CB!!! Thank you so much for your description of the PT Scan! I'm headed there in a few hours, and darn, did I plan it wrong. I haven't eaten since last night for the "glucose fast", and won't be able to, until much much later today... oh well. I guess most would have gotten up early to eat in advance, or planning the Scan first thing in the AM!
ReplyDeleteAnyway, thank you for your description and advice. I don't have any Ativan, so hoping I won't have any probs. I'm generally pretty good about visualizing and controlling my thoughts and feelings for things like this. Must be all those years in the "counseling" field, right :))
Thank you so much CB for being such a loyal blog follower, and for your positive comments. As I always say, I never know who's reading my story, and I truly appreciate you commenting and letting me know you are :)) I thought and thought about our connections, and figured out how we know each other, so I will PM you :))
Hoping your remission status is good, and you are far away from all this treatment craziness. How did this happen to us? Ridiculous! I shake my head at 8yrs of this, and even tho I know it's forever for me, sometimes I secretly think it will just disappear LOL... but not a chance, labs yesterday show I'm Neutropenic again, and I'll find out my MM status on Monday at my next Dr and chemo appt.
Thank you for your friendship and loyalty CB xoxo :))