Yep, it's Friday the 13th... perfect day to already break my "on the 7's" theme posting, as I have news, labs, numbers, results and big decisions to make as a result of my oncology appointment yesterday 1.12.17
This could have been my windshield,
had I not turned the wipers off when I did!
So I made it to my appointment alive, and my Dr brings up my labs with a worried look, and let's me know she is very concerned with the upward climb of my numbers. Bottom line: Myeloma is winning over Pomalyst. Pom is barely making a cellular dent... Time to change the treatment plan AGAIN. Ugh!! Nooooooo!!! C'mon Pom, please work! We got off to a rocky start in Nov and Dec with all my crazy allergies, head cold illness and crazy pinched nerves back issue. Maybe one more month will make a difference I plead. I am less and less brave about this cancer thing every year, every change in treatment. I am so fearful of new and awful side effects. I've got the crash cycle down, know fatigue all too well, GI stuff in "control", neuropathy not too bad, etc... I'm just starting to be friends with Pom... perhaps that's the problem: If chemo DOESN'T cause dramatic side effects, maybe it's not working?... see Pom and Dex steroids are giving me the opposite problem Revlimid did... going from unpredictable volcanic diarrhea with Rev, to both diarrhea and being corked up with Kyprolis, and now Pom and Dex fully cork me up. Maybe it's all the myeloma cells corking me up? LOL, sorry to the non-patients reading this. Us cancer patients talk about our GI issues and body side effects like "normal" people talk about their social plans!
My Dr wants to stop Pom and start Darzalex and Velcade, along with good ol Dex steroids. As in start next week! Darzalex SCARES ME! I have read a lot about it, from Research sites to Pharma sites to Patient sites. The initial infusion of Darzalex SCARES me! Google it, read patient blogs and infusion insanity! (Besides, isn't it targeted to IgG myeloma, and I'm IgA?) Remember I skipped right past Velcade for Kyprolis, Nov 2015, because of all the reports of terrible Neuropathy with Velcade. Ugh! I hate myeloma, and hate that I am controlled by myeloma and what it is doing to me and that I have to take meds or die!
So after discussing my labs, and various options for treatment and meds, I gave in, and said "yes, ok Dr, you're the expert, you know best, I will try this new regimen..." I drove home teary, sad, mad, frustrated, and incredulous, that this is what my "life" has come to. I'm tired and worn down from 7 years of this battle. I want to feel good. I want to play. I want to be "normal". I want to make "superficial" plans like everyone else. I want to work, play, go places, other than appointments related to myeloma. I just want to live an uncomplicated life...
Fortunately, it wasn't raining much driving home. Just misty, so I did ok without functional windshield wipers. Broken wipers. So symbolic. Rain streaking across my windshield. Tears slipping from my eyes. A broken, upside down wiper. Me, broken, my life upside down...
Ok, so Beta2 went down 10 points ^
These don't look too awful ^
Ok, ok, yes... my IgA went up 10 points ^
Ugh, M Protein up too ^
My lovely compromised immune system
And yes, this one says it all:
ABNORMAL! :))
I was grateful to return home safely, but not a happy camper psychologically. Still "shell shocked" Pomalyst wasn't killing off myeloma cells as I had "expected", stunned that my labs weren't better with plummeting myeloma stats, and overall just sad about the status of my life. So what did I do to "rebel" and feel better? Put on a coat, rubber boots and went out to my "happy place", the horse arena, and scooped the horse poop in the pouring rain. Quite fitting, don't you think? Shoveling poop, in so many ways, in my life...
Pouring rain here.
These pictures don't tell the downpour story!
Happy horsies, clueless to my situation
And it cleared a bit,
then poured some more
I sloshed around and processed my situation
Poop here, poop there, poop everywhere in my life
Here's what I wrote to my Dr late last night:
Hi Dr P,
I've been doing a lot of thinking and reading, and I am
"scared" to start Darzalex and Velcade together. I was looking over
my recent myeloma stats and saw my Beta2 went down a whole point, the Beta
Globulin went down a bit too. The IgA only went up 10 points and the M Protein
.27
I do realize my upward trend, but if you are ok with it, I
would like to consider the following for this next treatment cycle:
1- continue with Dex and Pomalyst for one more month, but at
full dose, 4mg
2- or try Dex and Velcade
3- or try Dex, Pom and Velcade together
4- or try Darzalex singularly
Last option, I don't think I am ready for is the combo of Darzalex and Velcade, as side effects from 2 new meds may be overwhelming for me.
So sorry to be such a pain. Please let me know your thoughts.
She's gone for the weekend, as her RN called me back... so we'll see what she says early next week. I was also informed that I was already scheduled for the chemo lab for Thursday, Jan 19... ummm NO!!!
Ok Myeloma Patients Out There... Help Me Out... Your Opinions Please!
Today, Friday the 13th-
Pondering: clouds, thoughts, choices,
fears, frustrations, sadness, anger
But it's hard to stay upset, when so much beauty
surrounds me...
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
I agree with you. One more month is not going to hurt. There were some good things in those numbers. I would love to have your light chain ratio, and I am not taking any treatment currently. Side affects of treatment are not just a problem for living, but they can also lead to death. Quality of life is very important. Might be time for a second opinion. I am like you, horse time is NOT optional.
ReplyDeleteRead your post faithfully, You are an amazing woman. Whatever you decide, all the best, and wishes for some happy trails in 2017.
Jan
Thank you so much for Jan for your input and opinion! Your points are how I feel, and I have been wary of "aggressive" treatments. Not that Darza and Vel would be considered "aggressive" now, but I'm just whimpy about side effects and potential life threatening infusion reax and delayed reax. Thank you so much for appreciating my posts and nice to meet another "pony pal"! Perhaps all the "fly spray" contributed to us getting MM? Congrats on doing so well, and not being in treatment! Tell me more of your story please! Thank you for your comment Jan! :)
DeleteJulie,
DeleteI am not sure you should listen to my advice after reading the other comments. I am more a Gus (Lonesome Dove) type--"you ain't taking off my last leg.", ignore that if you haven't seen the series.
Ten years MM (I was 49), but caught it late, I am sure I had MM for at least a couple of years before diagnosed. Severe kidney damage (did some dialysis) is what finally exposed the MM. I don't go to a doctor very quickly. Though to be honest, when I did go to GP and told them I was tired, the doctor told me I just needed to cut out the diet pop. UGH!
Now when I look back on my labs, I had low hemoglobin for over four years before they caught on.
I did nine months of vel/dex followed by auto. Six years no drugs. Kidney's recovered. After six years kappa's started moving up, when they hit 40's went straight to another auto.
My specialist, who is great, offered maintenance after this auto two years ago, I declined, and I don't think she was surprised--she knows me well. So again, I am two years drug free, my kappa's are a tiny bit elevated, and so is my kappa/lamba ratio. Though I do run a hemoglobin of 14+.
Fulfilled a lifeline dream and now have three horses (got them after my first transplant). Trail ride extensively. Been put on the ground a few times...my bone density test..haven't broke a bone yet. Ironic, with MM isn't it? Have gone from one grandchild to eight, with the last a set of twin girls. (Doctor moved my second auto up and skipped the months of preauto chemo because I would not do transplant when the twins where due or during spring planting. It worked well -CR, I helped take care of those babies almost every day for three months. Precious times.)
Every MM is different, every patient is different. So that is why my advice may be of no use-your MM is much more aggressive than mine. I seem to be able to have drug free periods. One can argue that I may have been better off with maintenance. I am fine if I was wrong. I have lived life exactly the way I want. Had a blast. Have NO other health issues.
They won't put in my obit that "she fought a courageous battle with cancer." Nope, it will be, "she lived well." I am not scare of dying, I am scared of not living.
I have no idea how I will face the tough decisions you have, but they are your decisions.
I do know that you are one strong lady, behind you all the way no matter what course you and your family choose.
Jan
I always suspected all the woodwork I refinished with those toxic chemicals might have not been so good.
Wow, wow, wow Jan! I pale in comparison to your story. Thank you so much for sharing as you have. Truly, you have a huge story. I feel like such a whimp! And you ride! Wow... you are braver, and living life "better" than me. I am so happy to read about all your treatment success and life's milestones you've passed! 2 SCT's! wow! You are so much braver than me. I love your "rebel" attitude. Reminds me of me, where we put the brakes on treatment, etc for other more "important priorities"! Love your story Jan, and would love to know more, and all about your horses and riding adventures too. I don't think my decisions are any more difficult than yours, and I love your obit words. Same for me! Thank you so much for sharing and caring. Your story is very "blog-worthy"! Congrats on all your grandkids and treatment success! Please write to me at Missy.Myeloma9@gmail.com . Thank you Jan! xoxo
DeleteI understand your fear, your fatigue, the struggle with side effects and your wish for things to be normal. I've been living with myeloma for nearly 13 years -- it's a physical and mental challenge. To me, it doesn't seem to make sense to delay the switch in treatment. Darzalex is reportedly a game changer in myeloma treatment, getting remarkable results in the patients who respond to the regimen. The medical team is with you to manage the infusion reactions. Of course it's scary! -- but it seems the first infusion is the most challenging and it gets better after that. You need to be strong and brave and move forward. What is scary to me is delaying the new line of treatment because of fear, especially if the delay allows your myeloma to establish an even stronger hold in your body. A month does matter. Who knows? Once your system adjusts to the new treatment, you might actually feel better and live longer. We fight so hard for life. Even if there is discomfort and you have to deal with side effects, it's better than no life at all. As one tough cancer patient said to me, it's better to be moving forward, even with pain, than getting fitted for a pine box! Hang in there and stay strong.
ReplyDeleteUgh, you are right Anonymous... and my brain agrees with you.. and I should take heed of your wisdom, as here you are 6 years ahead of me! Congrats on your 13 years surviving MM! That is truly impressive, and my hat is off to you! I appreciate all your points, and I have mulled over all that you mention... but I still come back to losing my carefree, naive bravery, and I just want to give Pomalyst a chance, one more month at the highest dose. I've only done 2 cycles so far, and my #s weren't all that horrible ;) You are right, and I deeply appreciate your honest, encouraging input. Please tell me more of your MM story and treatments. Again, congrats on 13 years!
DeleteI sent you an email, hope it didn't end up in your spam folder. It's a gmail account starting with 197....
DeleteHey Julie,
ReplyDeleteI too was dx'd 12/2009. This cancer is often described as heterogenous both within and without the patient. As individual as fingerprints!
That being the unfortunate case for each os we have no way of extrapolating treatment success from one to another, or for that matter, treatment failures From one patient to another. We just don't know what may or may not work, withany real certainty, in any given person. :(
I suggest that you seek a second opinion at a different insttution. Many well-known doctors will do 60 minute phone consultations if you would rather not drive into the "big city".
Long and the short of it is: you need to take action as it appears from what you've written above that the dominant MM clones need to be hit with a new therapy!
Best,
Steve
Ugh Steve, you are right. My brain agrees with you, but my fears over-ride what I "should" do, and I've lost my confident "I'll bully myeloma" attitude. Actually my Drs want to be more aggressive, it's me putting on the brakes. They want me to move forward with new treatments all the time, so I am very confident with the team I have. All the Drs consult on our cases, both locally and with my City of Hope SCT Drs. So I do feel very confident with my teams (consisting of over 6 Drs at each location!), and I'm very blessed to have excellent insurance that pays for any treatment- including all the new "cutting edge" options. My son has wanted me to seek other opinions, but I tell him the same :)
DeletePlease tell me of your story and treatments since we share the Dec 2009 Dx! Congrats on your 7yrs beating up MM. Tell me your type of MM and treatments so far. Thank you so much for your honest input. I truly appreciate you reading my rants and posting your sincere thoughts! Thank you!
Julie Julie Julie. Why is shoveling horse poop your thing? Remember last time you fell and left a mark on your face? I guess you were wearing some protection this time. I can't say anything about your medication plan as I'm not educated in that area at all. But, you as the patient need to feel comfortable with what is going to occur, the pro's/con's of side effects and if your body can handle a strong dose of anything right now or even later. The story of the windshield wiper's: I can see it but it's true what do you do when the rest of the world is driving so fast and of course no one would let you over. But at that specific time everything seemed to be building up inside and taking a toll. My dear friend...breath in and out. Frank's surgery is coming up (2/2 at UCLA)and I have had these days more often and I'm thinking to myself "what is happening?" I say "Let it go" of course the Walt Disney song from Frozen comes to mind. Well, take care my friend. Happy to read the post and get an update. - Theresa
ReplyDeleteahahaaa thanks for a good laugh Theresa! Yes horses are to me, as softball is to you. I can only imagine all the sports injuries you've sustained too. Yes, I fell into the horse poopy dumpster in the summer, but all's been good since then. Don't laugh, but scooping poop is basically my only form of exercise at this point, as my options to do things outside my house are quite limited now. We'll have to share our "war stories" when we finally meet up this year. Bet Frank will be glad to get his surgery over! It's always something, and this life never disappoints us with new challenges all the time. Mid life and the "golden years" sure aren't what we thought it would be, right? I think about you all the time dear friend, and thank you so much for continuing to follow my posts and rants. You are a true friend Theresa! Enjoy every day with your family, and I know Frank will do just great. I will look for your update on him too. No more drama, right?! Thank you! xoxo
DeleteJulie, I don't know what to say. Can't make a recommendation. But I will say this: Don't be afraid of Velcade. I have been on Velcade sub-q for almost 3 years. 1 shot a week for 3 weeks with 1 week off. I have had no neuropathy. Of course, I could just be lucky. But Velcade sub-q has much less neuropathy issues than when they used to do it by IV. I get me shots in the stomach. Started out in my arm, but it left me sore and with a large red mark. Nobody sees the red mark on my belly (except hubby) and it doesn't hurt. I wish you the best with whatever decision you make. You are an amazingly strong woman to have survived this far! Keep it up!
ReplyDeleteHi Sheri! Thank you so much for commenting and sharing. Just what I needed to hear this week, as I will brave up, and go with Velcade this Thursday. Thank you for letting me know you've done so well on Velcade shots. I'm just so scared of new treatments and potential side effects. So glad your treatments are working for you, and thank you for your perfectly timed comment of support! :) xoxo
DeleteThat's what we are here for...support and encouragement!
DeleteThank you Sheri! Hope all is good with you! :)
Delete