First of all, thank you to my followers for your detailed replies and suggestions on my previous post! I truly, very much appreciate your comments and insights!!! Thank you to all my invisible followers too! I appreciate you checking in and reading my musings.
I'll (try) to make this short(er) than usual, as I will have more of an update after my 2nd oncology appointment next Friday.
Here's me and sweet Abbie over a year ago. Just loooove her!!!
She's a death row rescue from the mean streets of LA
To be honest, I have been too optimistic (perhaps naive), trying to see my situation as better than it actually is... hence MY stubborn stupidity at remaining on low dose chemo. So after my oncology consult this past Thursday with my City of Hope SCT Doc, who very nicely (but seriously) let me know that the low dose Revlimid I am on needs to change NOW, if I am to make an impact on the increasing levels of cancer within me. Ok I get it. Myeloma is winning right now.
Dr Spielberger (who is Director of the Kaiser-City of Hope Hospital Bone Marrow/Stem Cell Transplant Department), clearly let me know that I should be doubling(2x), tripling(3x), quadrupling(4x), quintupling(5x) the level of Revlimid I am on. And if Rev and Dex stops working for me, we'll move on to all the other Myeloma mashers!
I laughed when he wanted me to jump from 5mg to 25mg ! ahahaha Doc... kill me fast! I reminded him of my death defying allergic reax in 2010 when we went from 10mg to 15mg. I quickly developed a lovely blotchy, patchy, raised rash moving rapidly over my body. I looked like my Appaloosa horse RedBear! I had to eat Benedryl like candy and we immediately stopped the 15 and went back to 10, and stayed there for the remainder of my initial 2010 treatment. Doc said ok, ok, we'll start slower... how about trying 15 next RX?? Hello.. NO, I said... let's be gradual here and go from 5 to 10 and then see if I can tolerate 15. He's very amused by me, in a good way :)
Why this now, after a few months of (minimal) success? My Myeloma contaminated IgA immunoglobulins haven't stopped rising (4x the high end of normal), and my M-spike is spiking more. And you know what??? I secretly knew. How? I've been a sickie most all of March. (I have to always remind myself and others: MYELOMA IS A COMPROMISED IMMUNE SYSTEM CANCER! So no wonder I am always sick! duh Julie!)
I only went in to my office a few days this month, and the times I did, I shouldn't have. Last week, the one day I went in, I was so dizzy and tingly (from hardly eating for a week), I thought I would pass out!!! I told my sweet mom/daughter student appointment that I felt faint, just in case I did a face plant on my desk!
First I had a crazy sinus fever thing for over a week to 2 weeks, then a week-ish later, I developed lower GI volcanic issues... where, (sparing you the gross details), my bathroom became my permanent residence and office. I thought, this will pass, probably related to medication overload. So I contacted my local oncologist and we reduced the levels of Mepron and Acyclovir (even though she didn't think that was the cause, but wanted to see if my GI would calm down). Well it didn't, except on Dex steroid days. I even tried going out to dinner with friends, and again, sparing you the details... had to leave the restaurant FAST, ditching them and Jim, racing home and "praying" I wouldn't ruin Jim's car ... BARELY making it to the bathroom... ugh... that was sooooo awful!!! I've lost 5 pounds this month, but that's ok. What mid-life girl doesn't want to lose a few pounds? Well, not this way, thank you very much stupid Myeloma challenged immune system!
And so, realities are (finally) setting in:
I have cancer
I'm a sickie
I feel lousy more than I feel good
I can't do much of anything, as I have to stay close to my bestfriend "John"
Cancer is winning
Myeloma is stronger than me
My internal Army, Navy, Marines, Air Force, needs better "ammunition" asap!
My immune system continues to fail me
I have felt yucky most all of March
And this... is my "March Madness"
But I will battle forward and increase my friend Revlimid
I will eat Benedryl like candy if I have to (I like that it's hot pink!)
I will TRY to accept that I have cancer, and I am not the Julie I used to be
And I will savor the good days, and be pissed at the bad days, but I will never give in Myeloma!
You hear that Myeloma... I'm not giving in or up. I'll fight until I can't !!!
Last Sunday "selfie" when Dex steroids temporarily helped me feel better
for a day or so... then right back to GI drama.
Hello Dex again today, please let me eat and pretend to be normal!!!
Simple explanation of IgA immunoglobulins. Funny how certain article realities finally sink in!
LOL- not so short post after-all!!!
Thanks for reading and caring, and I will update on my medication plan in a week or so.
Thank you followers!!!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Julie, So sorry to hear mm came to visit again! I know Linda & Ernie and live in NC and was treated at Duke. I am two years post SCT & on Rev maintenance 5mg. After transplant, I started on Rev 10mg and after about a week every time I ate had GI issues, reduced to 5mg and still occurred. Finally visited gastroenterologist last November and was diagnosed with celiac. I am not diligent enough and if I have something with gluten while I am on week 2 or 3 or rev I get sick, the week I am off not--so the rev definitely exacerbates it. So hate to add one more thing, but you might try going gluten free and see if that helps. Wishes for you to feel better & mash the mm down! Carol C.
ReplyDeleteThank you Carol! See my reply below :)
DeleteDear Julie, I have no medical advice to give, only a caring heart and thoughts of relief being sent your way. Your suffering makes me so sad and I wish there were some sage words I could offer to give you relief. Instead I send a cyber embrace and lots of loving thoughts.
ReplyDeleteThank you Ilene! See my comment below :)
DeleteLove you Julie xo Praying for you every day.
ReplyDeleteLeslie C.
Thank you Leslie! See my reply below :)
DeleteIt was great to see you last month while you and Jim were cruising around in my track. What an awesome surprise that was!! I love you Julie and feel helpless when I can only give you some cyber hugs and leave comments. I am wondering as well about other medications. I wonder if other MM meds work better for you? Less side effects or more tolerable. Can you eat pot brownies? Love you Julie.....Madonna
ReplyDeleteThank you Madonna! See my reply below :)
DeleteMorning Julie! So sorry to read about your GI issues...they definitely will control your social life if not under control :-( Not the most fun way to lose 5 pounds. I love the picture of you and your chocolate labbie, where in spite of everything, your smile is a beautiful thing!
ReplyDeleteI agree with Keith...maybe a second opinion as to the next step/drug to try? There are alot of experts out there for sure, and your life is worth fighting for!
EZ's latest lab work shows him still in remission with no detectable m-spike, and we are so grateful. He is so unique in how he can tolerate Revlimid...must have a cast-iron stomach! As our friend Carol suggested, a gluten free lifestyle may make a difference for you as it has for her. I recently read Grain Brain and he considers gluten to be "poison" to our brains, and Wheat Belly condemns it as well. We still love our bread from time to time, but are trying to severely cut back on it. Less seems to be best.
Enjoy spring as best you can friend and keep us informed! Rest, enjoy some dark chocolate and red wine, and eat lots of fruits, veggies and grass fed red meat! Much love...Linda (and EZ)
Thank you Linda! See my reply below :)
DeleteHi Everyone! Thank you so much for your heartfelt replies and suggestions! I sincerely do appreciate you reading my blog and offering suggestions. I am finally feeling much better and I am eating more, and losing less lol. I think I may have had some sort of (lower lol) GI bug, that decided to move in and stay a while. I am still insecure about what will happen when I eat... but the negative result is lessening! Yesterday and today has almost been "normal" and I actually went into my office and saw some students! Yay for a bit of normalcy!!!
ReplyDeleteAs for a second opinion, I don't feel this is necessary as I have 2 oncology "teams". I feel very comfortable with Kaiser connected to City of Hope Hospital, and all my oncologists consult with each other, and are suggesting and doing all the cutting edge MM treatments. They cite all the recent research, and they know I have excellent insurance that will cover "anything".
Honestly, it's me that put the brakes on higher doses of Rev. It's me that thought I would wrangle MM back with low dose. It's me that is not feeling brave to try other MM drugs yet. My oncologists offer all the current and cutting edge meds, I just haven't wanted to switch off of Rev, until I feel for certain, it's not working. 5mg is nothing, and I know it, so tomorrow I will acquiesce, and go for 10mg for April and see what happens. If my numbers don't decrease significantly, I will go for 15mg and see what happens from there.
As brave as I appear, I am not anxious to suffer from new side effects. I know Rev, and me and Rev did GREAT in 2010, so the idea of changing meds and dealing with new potential side effects scares me :/
Truly, I have fantastic Drs that know their stuff, and offer everything that we all read about online, on all the MM sites.
Again, I thank you so much for caring and sharing and offering suggestions. I will muster my ol cowgirl bravery and raise my dose, and see what happens. Thank you from the heart, and I will post in few days what we decided. Love and thanks, Julie
Hi Julie,I know a little of how tough this has to be on you.But you know I have a lot of faith that you will continue to help so many others who
ReplyDeleteare suffering and not nearly as positive as you.Life is for living and
few do it as well as you.
Ron
Thank you Ron for always reading and commenting!
Delete