jump to navigation

Mask Redux October 12, 2018

Posted by Judy in Musings.
8 comments

Yep, you read that right, I’ll be getting another creepy radiation mask.  I had a follow-up brain MRI yesterday to check to see that the previous radiation had done it’s job.  It had.  Good news.  The MRI also showed that I have “inumerable” new lesions through the brain.  Bad news.  The last things the MRI showed was that there is only a very minimal amount of brain swelling and that the brain lesions are slow-growing.  Good news.

Enter the new mask.  Tomorrow I go in to be fitted for the new mask.  The doctor says this is a different type so it should not be as tight.  Even so, I’m going to have a word with the guy making the mask.  Then sometime next week, I will start whole brain radiation, which is different from the pinpoint stereotactic radiation from last time.  His preferred plan would be 15 daily doses using the hippocampus sparing technology.  The hippocampus is deep in the brain and is where memory is stored.  He really wants to avoid radiating that for several reasons:  1) I’m young, 2) breast cancer patients tend to do well with this treatment.  The problem is that the trial that showed that this therapy actually did decrease significantly the memory issues is a stage 2 trial.  This means that it was a small number of patients, not-randomized, and without a control group.  Apparently, treatment changing decisions are not based on stage 2 trials, rather, they are based on stage 3 trials.  Practically speaking, the insurance companies sometimes don’t want to cover the treatment because it’s not based on a stage 3 trial.  But the radiation oncologist said he is prepared to fight and appeal and appeal to get it approved.  Does this treatment make a difference in terms of efficacy of the treatment?  No.  But saving my memory is important enough to him that he’ll fight.  I liked seeing that gritty side of him!  The other thing he’ll be fighting for is the 15 treatments rather than the 10.  Doing 15 treatments means you get more radiation overall, but then each dose is smaller, which reduces the chances of side effects.  But, it’s more treatments, hence more money.  So, he’s got his fighting gloves on.

Sometime next week I’ll get started on the treatments.  Once they are done, we wait another 2 months to get another MRI to see how many have shrunk or disappeared.  If all is well, the doc can do several boost doses.

I’m rather numb right now.  I spent a good portion of the morning just sobbing and talking to hubs.  We had some good conversations, and talked about the hard stuff:  What do I want my funeral to be like?  Do I want to make more videos for the kids?  What do I really enjoy that I should be seizing and doing now?  So we’d talk, and then I’d be okay, and then I’d start sniffling and sobbing again.  Brain metasteses scare me.  I can handle the new liver mets, and I could handle lung mets.  But the brain just scares me silly.  I’ll be spending lots of time on my knees, because for sure for positive, I can’t do this part of this journey with Him walking along and carrying me.

Advertisements

Plan D September 26, 2018

Posted by Judy in Musings.
5 comments

When you get MBC, you are given a package with an unknown number of plans inside.  There’s a limit to the number of plans available to those of us with MBC.  I don’t know how many there are in my package, but for now, we are on to Plan D.  The CT scan showed the increased pleural effusion, which we knew from the x-ray.  It also showed that I have 2 lesions in my liver.  They aren’t big, 1ish and 2ish centimeters, but they are new.  I was kinda bummed at that news.  That basically means that the cancer has invaded the four main areas:  bone, brain, lung, liver.  Alas.  The bone scan impression said:  elevated uptake in the bones could be from a healing response or from persistent metastatic disease.  Real helpful, right?  “Ma’am, either you are dying, or you’re healthy.”  We are hoping that this ambiguity will satisfy the insurance company’s requirement that “previous pictures were unclear in their results”, and then maybe they’ll approve the PET scan.  In the meantime, though, we know new stuff is going on an my doc was like “I’m not waiting for the insurance company to get their act together.  We need to start treatment right away!”

Plan D is chemotherapy (Taxol) and immunotherapy (Keytruda).  The chemo kills the cells at any point in the growth cycle, which is why I’m going to lose my hair again, probably have some mild stomach issues – although nothing like the previous chemo – and possibly a few other mild side effects.  This chemo is weekly, and I’m told it’s a very easy chemo to deal with.  So far, so good.  The immunotherapy works differently, but I’m not sure I totally understand how it works.  It only kills cells at a particular part in the cycle, so it’s not toxic, but somehow it teaches your body to kill the cancer cells.  Yeah, I have no idea how that works.  The “I’ve just been diagnosed with cancer” me would have gone out and done research.  The “I’ve had MBC for 18 months” me has no intention of doing research =)  I’m just taking the medical professionals’ word for it!

So Plan D was put into place on Monday.  I was at the cancer center the. entire. day.  Seriously.  I walked in at 7:15am to get my blood drawn (my blood draw from Friday showed low Hgb, which explains why I basically slept the whole weekend), had an appt with the doc at 7:45, then went back to chemo at 8:15.  There’s a fair amount of hurry up and wait with chemo infusions.  For example, they gave me Benadryl, which took 15 minutes, but then they had to wait like 45 minutes for it to really soak in to the tissues before they could give me the next med.  Rinse and repeat, and we finally got the chemo going.  The chemo itself took about an hour to infuse.  The immunotherapy only took about 20 minutes.  Once all of that was done, I had to get a unit of blood (remember the low Hgb values?)  I walked out of the cancer center at 4:15!  Next week won’t be as long because I hopefully won’t need another blood transfusion, and I won’t be getting the immunotherapy, as it’s every 21 days.  I just can’t be spending an entire day at the cancer center once a week!  That’s too much!

The one thing about Plan D that is interesting is that we are now working off label, in experimental land.  The immunotherapy has not been approved for breast cancer nor have any studies been done on it’s use.  It IS approved for lots of other cancers, just not breast cancer.  Combining chemo and immunotherapy also hasn’t been studied in this combination for breast cancer.  There are other studies that have shown that adding immunotherapy to chemotherapy has made both more effective, so we are extrapolating that out to breast cancer.  I’m kinda pleased that the oncologist is willing to go off the beaten path and to try new things.

Let’s pray that Plan D will be the long-term plan.  Plan C actually worked quite well.  The problem with that plan is that it had a finite life span, and as soon as I reached the end of it’s life span and spent 2 months without treatment, the cancer went bonkers again.  So continual treatment is the name of the game for me.  So Plan D, let’s get it!

Short-lived September 17, 2018

Posted by Judy in Musings.
3 comments

I win the prize for the shortest remission ever!  Just 2 short months!  My last chemo was July 5th.  A month later, I had a bunch of scans that pretty much showed a good response to the therapy and a good remission.  A month after that, I started having all over bone pain and discomfort in my lungs and trouble with getting winded.  I knew something was up then and that was the end of remission.

I’ve spent the past 2.5 weeks working with my oncologist trying to track down the cause of the new pains.  This has been made more difficult by the insurance company denying the PET scan request.  Their reason?  I’d just had a CT scan which already showed that I had metastatic disease.  (Duh, we already know that!)  Getting another type of scan would not give new information.  I beg to differ, though.  If I’m going to have pinpointed radiation to deal with the bone pain, we need to know where the cancer is, hence the need for the PET scan.   (Insert giant eye roll.)  The insurance company said, “No, no, no-no-no-no!”  So aggravating!  So instead, my doctor and I are going to play the game.  I’m going to have another CT scan and a bone scan (even though the bone scans are nigh unto useless), in hopes that the results will be inconclusive and that maybe they will approve a PET scan.  It’s so dumb that we have to play these silly games!

Anyway, so while we were waiting for the scan foolishness to get worked out, I decided that I wanted to get a chest x-ray, just to get SOME information.  I had the x-ray today, after which the tech said “Perla, you are in my thoughts and prayers, dear.” which left me thinking she must’ve seen some bad news.  And she did.  The fluid is building back up in my pleural space (pleural effusion) and there is evidence “concerning for metastatic disease” in the lung.  As soon as the doc saw the results, he asked that I come in right away for a visit.  There, he decided that he wants me to start another chemo right away.  It’s called Taxol, it’s once a week, and is much gentler than the AC combo I went through this summer.  Even though I’m approved through the manufacturer for the immunotherapy, doc said he can’t count on that working as it’s an experimental drug, which is why I’m starting the new chemo.  Ideally, he’d like me to do both, stating that some studies have shown the efficacy of the medications increases when chemo is combined with immunotherapy.

So, that’s where I am for now.  I’m waiting to get scheduled sometime this week to start chemo and immunotherapy.  I’ll be having a CT scan on Thursday, and hopefully a bone scan sometime this week before I see the doc again next Monday.  I know some of you might see this as bad news, and I suppose it sort of is since the disease is progressing.  But, I’m feeling pretty good, actually.  I have a partial answer for what is wrong and we have a plan.  Let’s do this!

The Mask August 10, 2018

Posted by Judy in Musings.
5 comments

If you saw my Facebook post, you’ll know that the radiation treatment was just horrid, but not for the reason you or I might have thought.  I dutifully took Ativan to help me be mellow for the procedure and I was mellow, not at all worried about being strapped in.  That is, until they strapped me in and I realized that the mask was TIGHT!!  Apparently, the plastic had shrunk a bit when it fully hardened and the top of the mask was pressing on my forehead in a really dramatic and forceful way.

20180809_145254

The techs had me shift a bit, but nothing really helped, so they just got started.  I made it through the radiation for the first spot okay.  They asked if I wanted a break or if I wanted to charge right on through.  I needed a break for my poor forehead, so they took the mask off for a few minutes.  They put it back on and got started on the second spot.  This involved taking pictures, moving the bed side to side and the machine all around to make sure there was enough clearance.  By the time they got to this point, my head felt like it was going to explode.  It hurt so, so much from the extreme pressure of the mask, and the ache was starting to travel down to my eyes.  (In fact, it’s been 7 hours since the procedure and I still have a slight headache.)  I discovered that if I pushed my lower jaw into the tense position, I could shift the plastic just a smidge so that it wasn’t pressing on my forehead so much.  This worked great, until my jaw got tired, and then I just got frantic.  I knew there had been 4 blasts of radiation on the first spot, so I was counting on the same for the second.  It became an exercise in how to move my body without moving my body:  clenching my fists, squeezing my toes, trying frantically to move my head, knowing it was futile.  The music was no longer distracting me, clenching my hands wasn’t helping, and I was close to waving my arms and telling them to “Get me out of this thing!”  So for the last two blasts, I counted out loud.  I don’t know that it helped, but at least I was able to pass the time.  I was so relieved when they came in and removed the mask.  I ended up with dots on my face from the tightness.

20180809_125017

At least it was only one session.  The doctor is very happy with how things turned out.  At this point, I have to just watch and see if I get nausea or vomiting, have mental changes, or unusual headaches.  If so, he’ll have to start me on steroids to deal with brain swelling.  The biggest side effect of the steroids is weight gain as well as a dramatic enlargement of the head, which is why he doesn’t want to give me the meds unless I show symptoms.  I’m okay with that and am praying that there are no symptoms.

The one fun thing about today is I get to keep that crazy mask.  I see a Halloween costume in the making! =)

Horror of horrors! August 8, 2018

Posted by Judy in Musings.
4 comments

I’m having brain radiation sometime this week, and I’m freaking out.  But I should back up a bit and share the results from the 3 scans I had last week.  The CT and bone scans were filled with good news.

  • My bones are in good shape and it appears they are healing.
  • Many of the lymph nodes are either smaller or no longer an issue.
  • The pleural effusion (liquid around my lungs) is very, very small and the pleural thickening (which was new after treatment 2 – Xeloda) is also considerably less.

So from this, it seems that the IV chemo did a good job of kicking the cancer back.  I don’t think it’s to the point of saying there is no disease, but the disease is very minimal, it would seem.   Our next treatment plan is to go with immunotherapy, which is the new up and coming treatment for some cancers.  It’s working quite well for lung cancers, but has not yet been approved by the FDA for breast cancer.  I’ll be taking an IV chemo called Keytruda, which is supposed to be a very kind treatment.  It’s not chemo, so no hairloss, no nausea/vomiting, etc.  The goal is to build up my immunity, not tear things down.  There is a chance that it could cause my body to attack normal organs, which would be bad.  But I think the benefits outweigh the risks.  Since it’s not FDA approved, the insurance company is most likely going to deny the request, at which point the doctor will go to the manufacturer and ask for the medication for me on a compassionate basis, and they will likely say yes.  So in a few weeks, I should be starting the plan.  Either it will work really well and I’ll hit the jackpot, or it won’t do anything at all, and we’ll have to go a different route.

The one thing the IV chemo regimen I just finished doesn’t do is pass into the brain.  This means that the brain gates were wide open for cancer to take hold, and it did.  I have two very small spots (3 mm and 5 mm) as well as one spot (also small) that may or may not be cancer.  The treatment I decided to go for is pinpoint radiation, which is one 45-ish minute session with several radiation beams that go directly to the 3 spots to get rid of them.  I’ll have another brain MRI in 2-3 months to make sure it worked and to make sure nothing  new has popped up.  Seems easy enough, right?  Read on!

Yesterday, I met with one of the radiation team members to get mapped for the treatment.  I walk in and he says, “So we are making a mask for you today?”  My heart stopped and I thought, “What? I’m getting an iron mask?!?!?!  This is not what I was expecting!”  Sadly, I was partially right.  The mask is not made out of iron, but it might as well be given that I can’t move at all.  The mask is made of some sort of plastic that is yellow and looks like a honeycomb flanked on either side by a strip with latches and screws that attach to a thing on the table.  So basically, the mask is screwed to the table so that I can’t move at all.  The mask is made up of two parts:  the part behind my head – this is no big deal  – and the part on my face.  (This is very similar to what they used, with the addition of cutouts  for my eyes and nose.)

When he first laid the hot plastic thing on my face (it’s hot so that it can be molded to my head/face, then it hardens as it cools), I thought “Having my lips covered like this isn’t going to work.”  Then he pushed a little guitar pick-looking thing into my mouth and told me to bite down on it.  That was better, at least I didn’t feel like someone had their hand over my mouth.  But after a few minutes, I realized that having my mouth open like that meant that saliva was pooling.  I could either just drool, or try to awkwardly swallow.  Go ahead, try it.  Lay on your back, put your finger in between your teeth and then try to swallow.  It’s very awkward and sort of made me feel like I was choking.  At the end, I realized that I could relax my lower jaw and I’d have a smidgen of room to move since he’d molded the mask to my non-relaxed jaw.  Honestly, though, that bit of room is just not much.  I mean, I get why my head needs to be perfectly still since they are aiming at something smaller than a grain of rice.  But, I’m hoping that they can knock me out for the procedure.  Lying still for 45 minutes with my head in a mask screwed onto the table . . . horror of horrors!!

Coming clean August 4, 2018

Posted by Judy in Musings.
5 comments

I’ve decided I need to come clean.  I’ve been lying to most of you all summer.  If you’ve asked me how I was doing or how I was feeling, and I said, “Good, things are going really well,” I was lying to you.  Well, not flat out, bold-faced lying.  More like only-telling-half-the-truth lying.  You see, my body has been doing much better this summer than it was back in April-May.  My mind, on the other hand, has been a complete train wreck.  I’ve spent most of the summer either angry or profoundly sad.  I discovered several things this week.

  1.  My schedule changed drastically this summer.  I went from being busier than I thought imaginable with school, work, etc., to having nothing on the calendar.  I suddenly had lots of time to think and contemplate what my life has become.
  2. My depression decided to rear it’s ugly head again this summer, which only made the life contemplations worse.
  3. I’m a different person than I was last summer, when MBC was new.  I’m thoroughly exhausted from constantly fighting the MBC fire.  This exhaustion makes me lack patience to deal with any other challenges.

I’ve decided that enough is enough.  I’m done with being an emotional wreck.  So step one is to get the depression under control.  The next step is to stop trying to manage other people’s emotions about my disease.  This means not glossing things over when people ask how I’m doing.  Seems like there should be a third step, right?  I don’t have one.  This is a good start,though.  Get ready for the good, bad, and ugly.

Getting clarity May 15, 2018

Posted by Judy in Musings.
7 comments

Last Wednesday, I had a PET scan, and the results were mixed.  After visiting with my oncologist today, I’ve decided that there is more good news than bad news, it’s really a matter of how you look at it.

The bad

  • I have progression in my lung area.  The pleura, which is the lining around your lung, has thickened.  Looking at the picture on the scan, I saw way more things lit up than I wanted to see.  Basically, this means that if it continues to thicken, it could restrict my lung from expanding and cause more breathing issues.  We don’t want that.
  • My tumor markers went up from 700 to 1083.

The good

  • Now I know why I was getting these weird pokey pain under my sternum, the pleural thickening.
  • Even though I’ll be starting a new medication that has lots of potential side effects (hairloss, mouth sores, constipation, nausea, tiredness, aches and pains), I’ll be starting this AFTER my responsibilities at the University are over, and as things are winding down at work.  What great timing!
  • I don’t have to wait around for insurance approval.  I’ll be getting a port placed on Wednesday morning, and hope to start chemo on Thursday.
  • It’s only four cycles, and then I’ll never have to do this very toxic combination again.
  • The oncologist thinks that this med has a better chance of working than the Xeloda.  (This is actually what he said before I started Xeloda, but I opted to try Xeloda first because I wanted to delay IV chemo as long as possible.)
  • I’ve been having stomach discomfort and nausea for like 2 months now, so it’ll be old hat once I start the chemo! =)
  • I’m feeling pretty good.  On a scale of 1 to 10, generally I feel like a 7.5 or 8.  That means that this is the ideal time to try this really toxic combo so that my body has the best chance of dealing with the toxicity.  (See how the timing is working out so beautifully?)
  • The cancer in my spine has decreased.  (Yes, please do a happy dance!)
  • The cancer in my femurs, humeri, and pelvis seems to be decreased as well. (More dancing!)
  • The bone metastases seem to be under control. (Alright, it’s a straight up dance party up in here!)

See, so there is way more good news than bad news.  Yes, it sucks that I have to go the IV chemo route as that chemo tends to just blast everything in site, whereas the oral chemo is more targeted, meaning fewer side effects.  But we’ve seen that the oral chemo isn’t cutting the butter, so IV chemo it is.  And no, I’m not thrilled about having a port again.  I’m actually pretty ambivalent about losing my hair.  I kinda rocked the bald head the last time, so, bring it, I guess!

I’m ready to get this new plan started and see how well it works.  If you are the praying type, I’m asking specifically that I won’t suffer the dramatic effects of the chemo, and that it will help to kick this disease into remission.  Thank you to all of you for your constant and continued support!  Words can’t express how much that support has been helping me this past year! ♥♥♥

 

Esophagitis and brains April 12, 2018

Posted by Judy in Musings.
Tags:
1 comment so far

I realized after several people poked me about the brain MRI that I never shared the results!  I guess that got lost in the rollercoaster that has been the past month.  The good news is that my brain is clear, no problems.  Huzzah!  I do have some spots in the bone marrow of my skull, but that is consistent with bony disease in my body.  I honestly don’t know how much bony disease there is at this point, but no one seems to be worried about that, so I’ll choose to not worry as well.  I’ll just focus on the fact that my brain is clear, for now.

My current issue is something called esophagitis.  I just finished 10 rounds of radiation to my spine in the t2-t4 region (which is where my compression fracture is) and the l2-l4 region (which is lower down where I was having pain).  When I signed the consent, the list of possible side effects was enormous.  The radiation oncologist is very thorough in explaining, which I appreciate.  But the long list means that I didn’t really internalize everything on the list.  I finished the spinal radiation on Thursday of last week.  Two days later, on Saturday night, I noticed that it hurt in the middle of my chest when I burped, or when I ate food.  I’d swallow a bite, and a second or two later, I would feel pain when the food got about 4 inches down my esophagus.  My dad had the thought that maybe it was a result of radiation, since the discomfort was exactly in the t2-t4 section that was radiated.  After talking to my oncologist on Monday morning, he seemed to think that was a likely cause, but wanted me to talk to the radiation folks.  Sure enough, when I mentioned the pain to them they said I likely had a mild case of esophagitis, which is an inflammation of the esophagus.  Fun!  So now I take a liquid an hour before I eat that coats my esophagus so that I can eat without pain.  The rad onc said the pain should clear up by the end of the week.  So far, I haven’t noticed the pain diminishing, so I’m feeling skeptical that it will clear up, but I’m trying to stay positive.  At least I’m not able to eat without pain with the help of the very expensive coating stuff.  As an aside, I’m SUPER glad that my dad was with me when talking to the rad onc, who was originally going to prescribe some other compound.  My dad asked what was in the compound, and we discovered, dun dun dun, lidocaine.  Yeah, can you imagine me drinking something with lidocaine in it?  My throat would close up immediately, I so allergic to it!  Phew, dodged that bullet!

Anyway, here’s a few more quick updates.

  • Pain meds are doing a decent job of keeping my brain tricked into thinking there isn’t pain.  I’m also hoping that the radiation I had to my pelvis will also help with the pain so that I don’t have to take as many pain killers.  I mean, I take the strong meds because I need them, but I’d definitely rather not be dependent on morphine, ya know?
  • I’m finishing up my 2nd cycle on Xeloda.  The main side effect is stomach pain and nausea.  I dry heave pretty much every day.  As awful as it sounds, it actually is really nice to be able to dry heave because then my nausea instantly disappears.  Hey, at least food isn’t coming up!  (Aren’t you glad I just shared that! lol)
    • After one more cycle, I’m going to have another PET scan to see if Xeloda is working.  I’m praying that it is doing it’s job as I REALLY don’t want to have to start up IV chemo again!

And, that’s a wrap!

Oh, the pain! April 2, 2018

Posted by Judy in Musings.
Tags: , ,
1 comment so far

Oh my goodness gracious . . . . . so. much. pain. I’ve been up since 1 with bone pain. I always said that if I ever went metastatic, I wouldn’t want bone mets, because it’s the most painful one. Of course, it’s also the one that allows you to stay alive longer, so it’s a big tossup. I’m here to tell you that the pain is intense.

I got up and walked around, which is the only thing that made it better. But my legs are weak and tired, so I couldn’t really keep that up. I had to wait 45 before I could take any pain meds, then I loaded up. But the pain was still there. I couldn’t lay down, couldn’t sit, couldn’t stand, so I just tossed and turned in bed and moaned and groaned. Eventually, hubs woke up when The Loose Cannon asked me what I was doing. “My body hurts, buddy.” We got up, and then I just melted down sobbing. No, not sobbing, crying, and hiccuping and gasping. It might have been wailing had it not been 2 in the morning. I cried harder than I’ve cried in a long time. I cried because I hurt so much. I cried because I didn’t know what else to do. Hubs held me. The Loose Cannon held me. They prayed for me. My mom got up, because mom’s are tuned in to hearing the moaning and crying and finding out what is going on with their child, even when said child is 41.

Once I got a hold of my crying, we starting walking around the dresser island, my little 3 generational support entourage and I. After about half an hour, things seemed better, so we decided to try going back to bed. But as you can see, it’s almost 4 am I’m still up. I’m not desperate to get the pain to stop, but it’s still present, and I’m not sure I can get comfortable sleeping, so I’m online getting things done instead.

I need stronger meds. Meds that will fool my brain into thinking that the pain is not there. Thankfully, I see the doctor in a few hours.

The Q & A shesh March 3, 2018

Posted by Judy in Musings.
2 comments

Between my appointment with the medical oncologist and the radiation oncologist this week, I was able to get all of my questions about this progression answered.  I’ve gotta tell you, it feels really good to have answers and to have a concrete plan!

Q:  Do I need to get my liver and lung biopsied to make sure it’s the same cancer?

A:  No.  Doing so wouldn’t change the treatment plan.  Also, the lesions that are on the liver and lung are very, very small and we don’t really need to worry about those organs having major progression.  (This is a small bit of good news!)

 

Q:  Should I get an MRI of my brain since the cancer seems to have moved around a lot?

A:  Yes, I think that would be a good idea.  We’ll send it to the insurance company for approval and then get you scheduled.  (I’m having the MRI on the 22nd.  I don’t think there is anything there, but this will be provide a baseline.)

 

Q:  What happens if I decide to not do any more treatment and just ride this out?

A:  Well, it’s hard to predict, but certainly you’ll have more and more progression to the bones.  Beyond that, it’s really hard to know.  But if you are ever to the point where you don’t want to mess with treatment anymore, I’ll support you 100 percent.  (I’m not to that point yet, but I DID want to know what exactly I was trying to avoid by taking new medications.)

 

Q:  My thighs really hurt.  It might be my thighs, it might be my bones, I don’t know, but it’s painful.  Should we figure out why?

A:  Yes, that would be a good plan.  Your femur bones are really important, they bear so much weight, so we want to make sure they are strong.  Let’s x-ray your bones.  (The x-ray showed a small metastesis to the top of the L femur.  The rest was clear, so no help there.)

 

Q:  What are my treatment options?

A:  You have two options right now.  We are stepping away from anti-hormonal treatment because that just doesn’t seem to be working well.  You can continue on oral chemo and take a drug called Xeloda that has a roughly 20-30% response rate.  If you are going to see a response, you’ll see that in about 4-6 weeks.  The other option would be to move to IV chemo and use Adriamycin and Cytoxan.  (AKA – AC)  (Cytoxan is one that  I used last time in 2014.  I didn’t use Adriamycin, the “Red Devil” because I had heart issues.  Those issues are resolved, so it’s now an option.)  Adriamycin is a SUPER toxic chemo, but very effective.  You would take 4 doses (every 2 weeks) and then if the chemo has caused remission of the disease, then we could talk about going back to some of the anti-hormonals.  But once you’ve done AC, you can’t do that combo again.   This combo has a quicker and more effective response rate, but it’s certainly more toxic.   (I really don’t want to go back to IV chemo if I don’t have to, so I’m leaving that as an option for later.  I’m going to take Xeloda, which I’ll talk about at the end.)

 

Q:  How often will I have to drain the pleura?

Q:  Also, when I breathe in, it feels like I have pop rocks in my throat.  What’s up with that?
A:  We can do a chest x-ray to check on the fluid and decide about draining.  I want to make sure you don’t have air in your chest wall that could cause your lung to collapse.  If you find that you are having to drain your pleura too often, we can talk about installing a pleural catheter, which will allow you to drain the fluid at home.  (Right now, I have a small to moderate amount of fluid.  This is one week after having had the thoracentesis.  The idea is that the medication could eventually kill off the stuff that is causing the fluid to collect.  Since I haven’t started the medicine, the fluid seems to be collecting quickly.  Sooo, I might be considering the pleural catheter.)

 

Q:  How can radiation help me?  I mean, once the vertebra is fractured, what can be done?

A:  Well, right now, your T3 vertebra has a compression fracture that is causing the outer part of the bone to push out into your spinal cord.  I’m actually very surprised that you are not in excruciating pain, given that your spinal cord is being pressed on!  (Answer to prayer?)  So if we do 10 rounds of radiation to that area, then we can reduce the amount of cancer in the bone.  Right now, the bone is in really bad shape because there is so much cancer there.  We won’t be completely getting rid of the cancer, but we’ll be able to reduce it such that the protruding bones will be able to come back together.  You could also do a consult with a neurosurgeon who would place screws and a rod in your spine, but that is a BIG surgery with a 3-6 month recovery time.  If you choose to go that route, you’ll be taking an asymptomatic situation and creating a symptomatic situation.  I would recommend against that.  (Totally agree!!)

 

Q:  Could you look to see why I have so much pain in my lumbar spine?

A:  Well, it looks like you have diffuse bony disease in L3, L4, and L5.  This means that there are small little spots spread out all over the vertebrae.  This will cause you lower back pain, and it could also be causing you pain in the thighs.  (Aha!  Now we know why my thighs hurt so much!!)  I would recommend radiation to the L3 area as well.  If we do this and you are still having pain, there is one more place that we could target: the place where the top of your femur meets your pelvis.  (Man, I love having answers to my pain questions!!)

 

So those are all of the questions that I got answered this week.  I also talked with the chemo nurse about the drug Xeloda.  I’ve heard about this drug and how harsh it can be.  I’ve had friends who had diarrhea so bad that they ended up in the hospital dehydrated and with resulting kidney problems.  I learned when I should call the doctor to make sure I don’t get to that dehydrated point.  The drug also causes an effect called hand and foot syndrome, in which the skin on your hands and feet swells, is painful, itches, and peels off.  The only thing you can do to help prevent this is to moisturize, moisturize, moisturize!  So you know what I’ll be doing!  It can also cause vomiting, but I have a plan to deal with that as well, and strict instructions on when I’m supposed to call the doctor.

I’ll be starting the drug tomorrow morning, with a big glass of water and an even bigger glass of trepidation.  I really pray that the medication will do its job with minimal to no side effects.  This is partly because I’m not exited about the side effects, but also because I want to go visit my BFF in Florida!

So there you have it, a long, but hopefully thorough update.  I’m feeling better and more positive, but I’m also realistic and know that this new drug is only expected to give me an extra 6-9 months.  Of course, I’d love to be on it longer, but there’s no telling because that’s how this disease works.

It’s a roller coaster.

There’s no cure.

It’s terminal.

But the drugs can kick the can down the road for an undetermined amount of time.

Thank you for your continued prayers and good thoughts, and for supporting me with your kind messages, and with your monetary donations and gifts of food.  I am humbled by the outpouring of love!