Second Round of Gem/Tax...Same as the First

Met with Dr. Thompson this morning, after labs and prior to chemo.  This is day one of the duo Gemzar and taxotere.  On day one the infusion is just the steroids, anti-nausea meds, and Gemzar.  On day 8, next Monday, it will be the whole enchilada and neulasta as well.  

My numbers (blood counts) have definitely been affected by the chemo but not so bad that the infusion couldn't go forward.  That, in and of itself, is a good sign that my immune system is responding.  Dr. Thompson asked me how I would compare the Gem/Tax with the doxorubicin.  Truth be told, the doxorubicin was easier, I think.  There was breakthrough nausea, diarrhea, mouth sores, and tiredness, but all in all, they weren't too bad.  But, I only had two rounds and I understand that the effects are also cumulative...so it may be that I just didn't have enough to have the full effects of red dragon.

But, it is conceivable that I may be on this combo for many cycles.  I know a few people that have had 20+ cycles.  If I even just get stability, my guess is that we'll ride the wave for as long and as far as it will take us.  That being said, I think I probably ought to note what I have experienced so that I don't forget and I'll be able to remember the effect accurately so that if it does get worse, I'll have something to compare with.

The first day of Gemzar I had no real side effects.  I slept...just because everyone recommended it...and I must have been tired because sleep came easily and I slept well that night as well.  Bone tired exhaustion did occur from time to time throughout the 21 day cycle.  It comes with little warning, but I'm extremely fortunate that I can just snooze when it hits.

Day 8 was they very worst of the cycle for me.  I slept the afternoon away but as evening came my temp spiked at 103.4.  It wasn't until early the next morning that my fever broke and I finally felt better.  We ran through the after hours protocols but there was a break down somewhere.  The afternoon of day 9 we had an appointment with Dr. Keedy and she suspected it was a reaction to the meds - she thought the Gemzar - instead of platelets crashing - since I was experiencing no more symptoms.  I was a little anxious today about the Gemzar because of that experience, but so far, so good.  Flu-like symptoms can be expected for 2-5 days after each infusion.  And, I haven't had that either.

The second week I experienced constipation.  Miralax took care of that.  In all honesty, I'd rather have the diarrhea but the constipation wasn't a huge deal either.

By the last of the second week/third week, I experienced mouth problems.  Not sores like the doxorubicin but it was as if I had drunk an entire mug of boiling water...like my mouth had been burned.  Food didn't taste quite right, but I could brush and floss with no worries, in comparison to the doxorubicin, but I did find food tinny and needing salt.

Perhaps the most annoying thing was that by the end of the second week I started to experience nose bleeds.  Probably due to low blood counts.  Dr. Thompson told me today that the neulasta recommended by Dr. Keedy had been approved by my insurance! Yes!  Although that brings its own kinds of issues, but I learned how to deal with them from the doxorubicin.

Breakthrough nausea actually happens from time to time but I honestly can't tell you whether it is the chemo or the tumors...perhaps it's both.  But, compazine or phenergan takes care of it well...just adds to the tiredness though.

Finally, there are some weird events that happen sometime, without warning.  I have no words to describe them.  I have described them as kind of "out of body" events.  Trying to analyze them hasn't really helped either.  Sometimes it's like you just get kind of dizzy...but it isn't really dizziness...kind of like your body just isn't connected and you wonder if your legs will move or hold you...your head isn't really spinning but you don't don't feel sure at the moment.  Just hard to describe.  I'm wondering if it's related to hydration as it more often seems to come upon standing or walking...but not always.  It's something I'm planning on working on this cycle because IF hydration is a factor, that's something I can do something about.

And, I really thought that the lumigan that I use for my glaucoma would protect my eyelashes.  The doxorubicin didn't really take them all out - thinned them some but they were still there.  That can't be said after a cycle of gem/tax...I have three lashes on my right eyelid, two on my left and one long one on my left lower.  I played around with false eyelashes but some warn that the skin is so fragile on chemo that the adhesive may create wounds that risk infection.  I see my ophthalmologist next month so by then I'll know if I'm going to be on the regimen for a while, if this will be something that will be dealing with, and I can ask his opinion.

My biggest complaint is really feeling like I'm a slacker or a flake.  It's just that I can't seem to feel certain that at any given moment I'll be in control.  I think that is part of the process of having to learn to thrive with cancer.  Today I came home and appliquéd three leaves on the quilt I'm working on and then came into the bedroom and took a 2 1/2 hr. nap!  What a joke!  I'm having trouble deciding if I need the rest or if I'm just slacking.  Rich keeps telling me to just roll with it...but I'm worried that could develop into quite a negative character trait.  I did fix lunch and dinner! Lol!  I've decided this round I'm going to set little daily goals and see how that works.  Tomorrow I'm going to my water aerobics class and the appliqué on my quilt strip and setting the appliqué for the next strip, and go practice the organ.  Wonder if I can manage that.  

On the plus side - we did have the chance to head to Alabama to spend thanksgiving with Joey and Carlie, and the kids.  It was such a pleasure and we really had a great time.  The kids have grown so fast.  It is hard to believe that Joey and Carlie are where Rich and I were just such a short time ago - at least to us! Lol!  Time flies so quickly and in the middle of it, there is always the worry and stress of trying to always know what is the best way to respond to whatever is happening.  In the end, it's all about love and teaching in the Lord's way.  On Saturday we had to opportunity to attend a temple session with Joey and Carlie too.  What a blessing.  We heard from all the kids and our extended families too.  That's what it's all about!

Sleep, Sleep, Oh Where Art Thou?

This morning I woke at about 3 am and just haven't been able to get back to "sweet dreams".  It is possible that my meds may be playing a part, but I'm hesitant to ascribe it to that entirely as there have been difficulties once in a while over the last little while.  Partly I think one of the problems may be "night sweats" - just dripping wet - wet me, wet sheets, wet pillow, wet clothes...wringing wet.  I used to believe it was all related to menopause.  However, of late, I've thought it was the cancer.  But the truth is, I just don't know.  Yesterday I brought the subject up with Dr. Keedy and she didn't rule it out but said wasn't typical for sarcoma.  But she did say it it is possible that some of the chemos may be dropping wbc's and rbc's enough that I might be experiencing some fevers at night, since fevers often spike at night.  That could mean that what I'm ascribing as night sweats are actually the fevers breaking.  Who knows?  Truly not me!  Needless to say, sleep wouldn't return and after two hours of trying I finally decided I might as well get up and do something worthwhile.

I have truly felt that I have needed to write, that it has been my own personal answer to prayer.  But, I haven't been as faithful in that effort for several weeks.  I have plenty of excuses.  Sometimes I just marvel that I can rationalize anything!  And there have been days when I don't know if it's even an excuse...but the effect is the same...regardless.  The point of this paragraph is to acknowledge that I'm way behind in blogging any of many, many, too many (but I'm not complaining :) blessings.  I may not get to all of them even now...that really is the problem of not keeping up!

I mentioned yesterday that we had travelled to Vanderbilt to see Dr. Keedy.  This was my second visit with her and it was a much better, less frustrating visit than before.  The visit with her the first time was great...but the admitting process was VERY cumbersome, long, and confusing.  Yesterday it was smooth and seamless.  Awesome!

I learned that she would have recommended the change in chemo therapies, just as Dr. Thompson did. However, the fact that I have started gem/tax makes it impossible for me to qualify for a new clinical trial of gem/tax with the newly approved Olaratumab.  Had I called/contacted her when the scans showed that I had continued growth on the doxorubicin, I could have been put on votrient until potentially approved for the clinical trial.  However, she said she'd probably still would have recommended just heading straight to the gem/tax.  There would have not been guaranteed admittance to the trial.  There would only be a 50/50 chance even in the trial that I would have been on the Olaratumab arm and if the trial actually shows it works synergistically with gem/tax like is seems to with doxorubicin then they can add it if it's fast tracked by the fda like it has been with doxorubicin.  All of this possibility is probably 18-24 months away at best.  But one never knows. The good thing with gem/tax is that there is no lifetime limit like the doxorubicin.  She's had a patient on and off it for nearly five years and I know of others from my sarcoma support groups who've actually been on it longer. When my scans showed the doxorubicin wasn't working, Dr. Keedy was at an international sarcoma conference in Portugal...whether I could have even made contact with her...who knows.  And I am still learning to navigate my way through the working relationships with a regular local oncologist (Dr. Thompson) and her.  I think that was what I liked so much yesterday, I felt like all of the uncertainty was wiped away.  For instance, there is much discussion on the sarcoma support boards about needing to see sarcoma surgeons when facing surgical options.  When I had the ER episode 8-9 weeks ago, part of what made me so concerned was who to go to...local onc, her, local hospital ER or drive to Vanderbilt.  But she was able to clarify that sarcoma surgeons are really important if the purpose of the surgery is to take out a mass entirely with clear wide margins that they specialize in. However, I'm NOT in that position, and probably never will be due to the quantity and size of the masses, and their locations.  I will more likely face debulking and/or interventional procedures as/if organs become involved, i.e. Colon, stomach, jejunum, arteries, liver, lungs, kidneys, gall bladder, pancreas, etc.  In those cases, a really good surgeon who specializes in the trouble I'm facing at the time, can manage and care for me where I am the best, instead of me trying or needing to get to Vanderbilt and a sarcoma specialist.  If I were in the Nashville area, it would be a no-brainier to go there...but three hours away...when I have local hospitals that are great...wisdom dictates my care here.  And it really relieved my anxiety.  

One of the great things she said they discussed at the conference in Portugal was how hopeful many of the Sarcs are with yondelis.  It's not so much about the shrinkage...that seems to be a very small percentage with any of the chemos.  But, there seems to be encouraging results at gaining greater stability for longer periods of time before the tumors adapt on yondelis.  There are a number of members on the LMS support boards who are currently on it, but it doesn't seem like a cakewalk either.  Anyone on Medicare is denied coverage currently because it is a 24 hour infusion and the protocol is to go to a infusion center and get "hooked" up and then return home for the 24 hours, then return to be "unhooked".  For some reason, Medicare will not cover that, unless they are hospitalized.  And now, with the upheaval in obamacare, many on the boards are anxious...fears of pre-existing conditions, Medicare, government options, and just uncertainty abound.  I am sympathetic.  My costs are out of sight...just the scans and blood work, let alone meds, chemos, and dr. visits...and so far my insurance has been really supportive.  Changes really are necessary if health costs aren't contained and laws aren't changed.  Hopefully these issues will end up being resolved for anyone facing serious medical challenges...regardless of type.  The last thing anyone with serious health issues needs to face are the added stresses of financial/insurance costs.  I don't have an answer.  But my heart breaks for so many.  And, I don't really believe it's the government's role either.  Just need the millennium to come soon!🤗

So, Monday was day 8 of my first round of Gem/Tax.  A round is 21 days.  On day one you get the gemcitebene with the usual steroid, and anti-nausea meds.  The next week you get more gemcitebene, more steroids, more anti-nausea meds, Tylenol, and taxotere.  Dr. Keedy would recommend the addition of neulasta.  The first day and week I felt tired and some breakthrough nausea.  But nothing too bad.  Monday was another story.  The infusion went well and Rich brought me home and tucked me into bed and said, "stay there!"  The infusion nurse had told us it was a good day to just rest.  I slept most of the day and wakened in the late afternoon, in time to attend dinner with a group of friends for our monthly home evening group.  I was freezing...teeth chattering, bone chilling, hand shaking freezing and no matter how many coats I had on I couldn't control the shakes.  I lasted about an hour and a half before I had to come home.  I felt so bad.  Usually we spend several (3-4) hours together and Rich really was enjoying himself, but I just couldn't manage any longer...and because we left, so did everyone else.  I immediately climbed into bed, doing a sort of "princess and the pea" reversal - four or five blanket and I was still shaking.  Rich jacked up the heat to no avail.  After about an hour, it occurred to me that I might have a temp.  I've been warned with every cycle of any kind of chemo that if I develop a temp of 100.5 I need to call the dr. or after hours doc immediately.  I took my temp and it was 103.3...well above the call number.  After several rechecks Rich called the after hours number and was put on hold for nearly an hour.  Neither he nor I wanted to head to the ER as if it was my blood counts and immune system crashing, being exposed to any kind of illness didn't seem like a good idea.  Finally, we got through and the woman that answered said she'd call the on-call onc and to wait for his call.  We waited until 3 am.  Finally I drifted off to sleep and sometime by morning my fever broke and I felt human.  Rich was furious and I don't really blame him.  However, I'm more a pacifist I guess.  I did talk to Dr. Keedy and she believed it was a reaction to the taxotere...although it could have been the second infusion to the gemcitebene.  Or, my blood numbers were affected...and that will continue as that is the natural course of this chemo...that's why she would recommend neulasta.  Seriously, we were well aware that flu like symptoms were possible for up to five days after infusion...guess I just didn't think it could happen to me! Seriously!  Do I really think I'm immune?  😜. Obviously!!!

Anyway - I'll contact Dr. Thompson's office this morning about the neulasta...if they don't administer it this morning it'll likely have to wait until the next cycle.  What we don't know, and neither does she, is whether or not Tricare covers it for this protocol, unless medically necessary.  That may be the reason.  We'll see.  But, as is typical, this is the week my counts should dive and the next week my immune system should start to rebuild.  Rich is REALLY protective.  I had thought after our appointment we'd head to the temple and catch a session.  But after Monday night he nixed that with no debate.  He feels strongly that I need to stay away from potential threat at this time...so I'll comply.  Next week, once my immune system has had a chance to jump start, I need to get the flu shot.  No guarantees with it...but I need to do what I can to help myself!  

And, I would add more info from the last few weeks, but, my iPad is dying.  So...I'll close for now with my heart-felt gratitude for all the good wishes and prayers of so many of my friends and family.  And for the knowledge I have that my Heavenly Father hears and answers prayers!