Monday, December 17, 2018

Living "Month to Month"

I am coming up on my monthly trip back to the NIH. It is a biggie with all the extra testing done every 6 months (i.e., bone marrow biopsy, 2 CT scans, MRI, etc.); Merry Christmas to me!

I feel like every month I think, okay, next month things will have evened out and I'll be feeling consistently good, or more like myself. I am lucky that I have good days to counter balance the bad ones but am ready to have a longer string of good days. I need an end point and feel like right now I keep thinking next month will be when I get to a "going state". I have not reached that point and feel like I am living month to month getting through the changes for that month and we readjust the medication levels when I am back at the NIH.

I've been on a long slow taper off dexamethasone. I am finally down to my physiological level and my adrenal glands have turned back on (yeah). They are not back to normal yet and some days I feel like I can feel them trying to figure out what they should be doing and over adjusting one way or the other.

In January, when I am back at the NIH I'll have another cortisol stim test to check and see if they are working enough we can go down further on the steroids. I'd really like to get off them because the longer I am on them the more I learn about the negatives of long term use.  I'm on calcium supplements because the steroids apparently leech calcium from your bones. My calcium counts in my blood work have been totally normal, but the endocrinologists have informed me that is because it is getting pulled out of my bones.

Calcium supplements were probably in my future as an aging woman anyway but it adds another medication at another time of the day. My medication schedule feels like my part time job to remember to take everything on time with, or without, food and with other meds (e.g., calcium needs to go with Vitamin D and the levothyroxine has to be taken first thing in the morning on an empty stomach without any other medication, and on it goes).

As I've come down on the dex, some of the study med side effects have started to pop back up and I tend to wake up with swollen eyes, feet and hands. I've had more strange rashes to trouble shoot but no fevers yet.

The good news is the study meds are working against the leukemia and despite the fact we have cut the dosage of one of them in half because of the side effects my blood work does not indicate the cancer is growing. The bone marrow biopsy will be the big telltale.

The other crazy thing about long term steroid use is that they suppress your immune system and distort blood lab results. When I asked my oncologist for an example he said that you could have TB and test negative because of the steroids. So I am taking my good lab results with a grain of salt since they could be an illusion created by the dexamethasone!!

I've been researching what is next and am intrigued by a doctor in the LA area that does something called functional profiling. They take your live cancer cells and then test the approved cancer treatment drugs on them to identify which is most effective and the least toxic. This seems so intuitive to try the drugs on the cancer cells before having a person take them and go through the trial and error. I have no clue how much it costs but hoping this concept gets more developed.

I also think the whole area of immunotherapy and using a person's own immune system to help attack cancer makes a lot of sense. I have this feel that a hundred years from now people are going to look back on chemo as barbaric and they are not going to believe for so many years that we poisoned people to get rid of the cancer.

I wish I could say only one more month and I'll be done with treatment, or that I'm feeling great and no issues with these medications. Reality is I am taking each month (or week, or day) at a time and hopefully will hit that point before too long!

Thursday, September 13, 2018

Reluctant Blogger

I've written several posts in my mind over the last few months but have not found the time, or the energy, to sit down at the computer. Feels like that is the story of my life right now! I just feel exhausted almost all of the time.

I've started forcing myself to exercise more and am doing acupuncture and that helps a bit but still feel like I get about a quarter of what I "normally" would be able to get done accomplished.

When we went on vacation this summer my doctor gave me a mini break from the drug that has been giving me the most trouble. I thought when I went off it I would feel magically better. Unfortunately new and different side effects emerged. At first we thought it was from the other study med but have an endocrinology consult realized that at the same time I went off the steroids and likely was experience adrenal insufficiency (or failure). Luckily because of how I was feeling I quickly went back on the steroids.

Basically because I have been on steroids for so long, at such high does my adrenal glands have atrophied. They shut down since the drugs are doing what they normally would. Apparently after 3 weeks on steroids this can happen and I am in the 6+ month range.... we are not sure what is going to happen when I finally go off of them. We are doing a super slow taper and the next two months at NIH I will have lots of tests to see where they are.

For now, I have to wear a medic alert bracelet and carry a syringe of cortisol with me. If I were to be in a car accident for example, my body likely would not naturally do what it needed to because of all the steroids.

The other new development is that I have had a very low heart rate. I use to have a low resting heart rate when I was running marathons. Let's just say I am far from that shape and as my cardiologist says my heart is "deconditioned" (polite way to say middle aged and out of shape). I've been doing a lot of testing to make sure it is nothing that will cause long term damage to my other organs from lack of oxygen, or other more permanent effects. I think it is part of what is making me so tired.

This summer I think I have moved from being optimistic to realistic. I will always be a glass half full kind of gal but I know there are only a couple of options left for me to try after this protocol. If I stop it since it is a Phase 2 clinical trial I will not have access to these meds again until they are approved by the FDA which could be many years down the road, and they are working against the cancer.

We are going to need to weigh the negatives of the meds I am on this Fall versus the fact they are working against the leukemia. I want to lay out the 5-10 year plan. Katt said to me recently that she feels like she finally realized what it means that I have cancer... we both cried but reassured her that is why I have sought out a doctor who is an expert and am investing so much time and energy and getting healthy.

I think this is an underlying stress for everyone in our family. Most days it is well below the surface and family dinners followed by games is all one of our favorite things to do but it pops up and whether it is conscious or not it is always there.

Maybe that is why I have been reluctant to write, I have not felt like having another reminder...

Monday, June 25, 2018

Missing: the fast forward and pause buttons

When the girls were little I remember people coming up to me while we were at the park, or a store, and saying "cherish these times, they go by so fast". Invariability someone said this to me on a day where I had been up since 3, or 4am, and had cleaned up multiple blow out diapers, or navigated temper tantrums, and all I could think as I nodded in response to the well intentioned stranger was time is crawling and I can't wait for the next stage!!

With the girls now rising 8 and 10th graders I know what they meant. This last year went by too fast. I feel like I want to press pause and savor the time with them. I can't believe Katt will be going away to college in three short years, and Margaret just two years after that.

The girls are teenagers and still have their moments...Katt has her learner's permit so we have been practicing driving. Overall, she is doing well but on one day of practicing parking before swim practice I had a friend text "did I just literally see Katt pulling her hair out during a driving lesson"... yes, and there were tears and a head hanging on a steering wheel in frustration and a lot of deep breathing going on in the passenger seat.  It is not all sunshine and roses, but overall, I want to soak up every moment I can with them that they want to hang out with me.

I'm taking piano lessons with Margaret's sax teacher who she adores because she really wants to share music with someone else in our family. I'm enjoying it and most of all loving how excited Margaret is after every lesson, or every time she hears me practice (which is sweet because I am just up to "Merrily We Roll Along").

In the family aspect of my life I desperately want a pause button to savor time. On the health side, I want a fast forward. I am still in a period of up and down days. On the positive side, the drugs are working against the cancer. I got bone marrow biopsy results last week and the cancer is down from 50% of my bone marrow when I started to 10%. However, they did the test because they thought the results would be <1% so somewhat disappointing.

Also, I am still on the dexamethasone roller coaster. Every time I get close to coming off of it I start to get very bad body aches, chills and fevers and I end up back on it. Steroids come with their own side effects going up and working back down off them...

I look "normal" so that is a mixed blessing as well. It can be hard having a chronic illness where you don't look sick. I am home in bed on the really bad days, and out living my life when I can.  I have a lot of days where it hurts to get out of bed and I just want to fast forward to a day where I feel better.

One frequent question these days is when will your treatment end.... unfortunately the answer to that is these drugs are ones I stay on until they become intolerable for me, or they stop working.  There are a few other treatment options but given I am only getting 12-24 months out of every protocol I have tried it is hard to stop something that's working even if it is less than ideal.  If I stop this treatment I won't have access to these drugs again until they are approved for use for my kind of cancer which may be many years, it is not an easy decision to stop.

I am trying to take life month to month at most (unless I am planning vacations which I have to have out there to look forward to!). On the good days I try to savor them, on the bad days I think about what is ahead and I do what I can to get back to a good day.

Tuesday, April 17, 2018

Too good to be true?

My appointment at NIH last week went really well. The nurses and I were really excited about my labs. They were great. Some of my counts were better than they have been in years.

My doctor put a bit of a damper on our parade and reminded us I had been on steroids for so long that they were likely influencing my counts. I peaked at 18mg of dexamethasone and was at 16mg a day for awhile but am down to just 2mg a day now. I'll have been on steroids for about 3 months at my next appointment so I have won a round of testing of my adrenal gland to make sure that it is still working when we remove the synthetic drugs. Then at my June appointment I'll likely have another bone marrow biopsy to really see what is going on.

So far no big side effects have reoccurred. The last couple of days I have woken up looking like I have a sun burn, but if that is the only side effect I have I am a-okay to stick with this.

My girls are definitely much more aware of when I am feeling good, and when I am not. They are also old enough to understand that having cancer reoccur so much is not a great thing. Luckily most of the time the teen anxiety in our household revolves around learning to drive, tests, homework assignments and other very age appropriate topics! 

Last night at dinner I was drilled on my dating history starting with my first boyfriend and who dumped who and how Chad and I started dating (he is out of town this week). I love that the girls still like to sit at the dinner table and talk but at one point Margaret interceded on my behalf to tell Katt to give me a break I did not need to share everything :).

I don't go back to NIH until May 10th so hoping for a couple weeks of minimal side effects (and hopefully no more conversations on my dating history!!).

Monday, April 9, 2018

Family Immersion Therapy

This is the first year our girls have ever been in different schools but luckily they had the same Spring Break which was last week. Our family's vacation pace was perfect for me. We sleep in, have slow mornings, do an activity, have lunch, do something else early afternoon then come back and rest, or read, for awhile before dinner.

Since my family really forgets that I am sick it is also good to help me get moving and feel "normal". Plus we were with my parents whose pace is more in tune with my current pace. I feel like last week was family immersion therapy to jump start my body back to normalcy.

I am almost scared of jinxing myself by saying I have been feeling good, but I have. I am still working on stepping down the steroids but am down from a peak of 12 meds at 5 different times of day to just 5 medications at 3 different times of the day.

I head back to Bethesda tomorrow and my testing is Wednesday. I am curious to see what my labs say because I feel like my hemoglobin is up and the chemo drugs are doing their job and my body is starting to give in to them and has stopped fighting them.

I just wish the weather would realize it is April and Spring!! We got a few inches of snow overnight and it just feels way to late in the year for this. I'd love to be able to be outside walking more but hopefully we will hit that point soon.

Will let everyone know how my appointments this week go.

Wednesday, March 21, 2018

Finally a good day

The fevers got much worse before they got better. On Thursday evening they ended up spiking up to just under 103 degrees. I spent most of the next day at my local oncologist getting the full infection work up and IV fluids.  Everything came back normal and confirmed the fevers were chemo drug related.

Friday night the chills started early and I should mention these are like no chills I have ever had. I was literally shaking so much I could not open medicine, type a text, etc. Then the fever started to climb. It got up to 103.8 and took 3 hours to break. My doctor kept having me take more steroids on top of the ibuprofen and acetaminophen which felt like they were doing nothing. I was on the edge of breaking down and going to the ER when I finally go to talk to my doctor at NIH.

He explained that the steroids are much better at preventing inflammation reactions like fever than addressing the issues, and they take a few hours to work. He'd had me pause the chemo drug that causes fevers earlier that day. Unfortunately it takes about 4 days to get out of your system.

Luckily Friday night was the low point and I've steadily improved. I restarted the chemo drug yesterday and am doing okay. I thought I was on high dose steroids when I first started and now my dose is literally 4x what I was on when I started this protocol (which was 4x what I had ever had before).  So I am an emotional powder keg and an insomniac thanks to the Dexamethasone.  It is this bizarre mix of both tired, and extremely wired at the same time.

Now the trick will be getting off some of the literally dozen meds I am on right now. I am taking medicine 6 times a day and had to get an app on my phone to help me manage it. I have list up as well because as of tomorrow dosage starts to step down every 2 days.

Today the dog got double walks so was a good day for both of us and so far no fever or nausea which counts as a win!

Thursday, March 15, 2018

And now fevers....

Ugh... I am frustrated... most people get fevers 3-6 months in to treatment if they get them at all. I hit it right on day 30.

I was back at NIH yesterday. The results of my last two bone marrow biopsies were back and it does look like the drugs are working and the cancer is down from 50-60% of my marrow to 40%. My platelets are also up significantly since I started treatment, but sounded like I was not responding as quickly as other participants in the trial.

Also, my hemoglobin is still low so that is compounding the fatigue. I am still neutropenic so continue to be at risk for infections. Otherwise nothing big came out of yesterday, we agreed I'd start on ibuprofen and acetaminophen around the clock to help with the chills, and aches and general feeling like I have the flu.

It really stinks to have long trips home after long days of being poked and prodded. Luckily my flights were on time this week despite the Nor'easter. On my second flight I was freezing and by the end of it my chills were so bad I was shaking. Plus of small town living is that I got home 15 minutes after my plane landed. I got right in pjs and crawled in bed and took my temperature and sure enough a fever.

The conclusion my medical team came to with the allergy team at NIH is that I did have an allergic reaction to the first dose and if I have to stop and restart I could have a worse allergic reaction the second time. So, they really don't want me to have to stop so if my temp goes up to 101.3 I have to restart steroids and go to my doctor for full infection testing and potentially stop the trial drugs so we want to proactively manage staying below this point. Luckily the ibuprofen and acetaminophen so far are keeping it just below the dexamethasone starting line (but not taking me down to normal).

I am really starting to wonder if this is my body telling me something .... like stop this protocol!! I am going to give it another week and see if things start to level out. If I continue to run fevers and feel like I have the flu constantly then we are going to have to accelerate the discussions on plan b.

This is frustrating because I thought it was going to be easy. Every time I've started hopeful and not gotten a long remission. On this one, not sure I can make it through the full treatment.... wishing it was easier to find what will work for me without all this heinous trial and error!

Thursday, March 8, 2018

Harder than expected first few weeks

The last few weeks have been much rockier than I expected. The high dose steroids I was on to offset the redness and inflammation did the trick on that front but they resulted in a host of different side effects... in the first week at home I had a trip to the ER and then another to my primary care physician to ensure something worse was not happening and I was in fact having side effects to the drugs I am on.

Last week was my Day 15 testing back at NIH. I had another back to back day of testing with some extra bonus tests given how I've felt. Good news is I am not allergic to the drugs I am taking and I don't have any bacterial infections. Bad news is I am very sensitive to the drugs and am seeing side effects earlier than most people which has been not very fun.

While the steroids made me jumpy, and irritable as I stepped them down I realized they were also offsetting chemo fatigue. My hemoglobin is down with the drugs as well so now I am napping daily on top of getting a full night sleep and I still constantly feel exhausted. The nausea and chills have been more pronounced and headaches come and go. I have good days, and bad days. I can rally for short periods but craving rest has been a constant.

We agreed with my medical team last week unless this evens out and my body acclimates to these drugs that I may stay on them for a bit longer to get the cancer down then try something with fewer side effects. Some of my counts were already improving last week which is encouraging. I go back again next week and hopefully they will have the early pathology reports from my bone marrow biopsies from my last two visits.

I'm feeling frustrated that this is not easier.... I had hoped that this would be something I would tolerate well and taking the medicine would be an extra couple steps in my day but otherwise seamless transition to before and after starting this trial. Feels like it should be easier than this...

Monday, February 19, 2018

Recap of Last Week

I am enjoying being back home and am still figuring out how to best live with my new chemo meds. Last week was a full week with ups and downs.

The first few days of last week were back to back, packed testing to establish baselines across literally everything you can think of. The good news is that I know definitely there is nothing else wrong with me besides having leukemia! There were no surprises in the testing. The results were taking longer for them to get back than they thought so I had to stay an extra night. In the end, the results came back and they got the drug companies approval on Thursday but I ended up staying two extra nights.

I started one of the two oral chemo drugs I'll be taking Thursday night. I asked a lot of questions over the course of last week about side effects, what were the most common and when they appear. In general, most of the side effects do not emerge until 3-6 months but they were clear they had seen huge variability in the timing of people seeing side effects and which ones they had with no patterns.

I took my first does Thursday night, went to sleep and woke up looking like (and feeling like) I had a bad sunburn on my face, and my fingers and hands were very swollen. I sent my medical team an email with the side effects asking if I should come by before my flight. The published side effects of both drugs are worse when taken separately versus together so I assumed it was no big deal, just needed to start on the other chemo drug.

I was not anxious until the nurse practitioner called and told me this was the first time they had seen someone react to the first dose. My doctor saw me immediately once I arrived and thought I needed to start on steroids. They got me in to dermatology who I had seen earlier in the week.  I had some professional medical photos of my hands and face taken for their research, started the steroids then both chemo drugs later. I was suppose to be on my flight home when I was taking my meds which freaked me out in case I had other reactions so we pushed my return flight back a day and I got some extra time with my sister and her family Friday night, and good friends on Saturday morning.

The side effects have been mild (chills, headache, nausea) so far and feel like I am learning the tricks of how to manage them. I have this feeling it is going to be like having your first baby - as soon as you figure out a routine things will change. We'll see. My family makes me feel healthy and like my normal self. It is good to be home with them.

I'm home this week and then I head back to NIH next week for more testing and refills on my meds. They said they usually see a 50% decrease in the cancer after the first two weeks. Excited to see how next week goes!

Monday, February 12, 2018

Back in Bethesda

It is definitely easier starting your second trial at NIH than your first. It is nice knowing what to expect, where to go, what questions to ask, some of the people, etc.

There are always unexpected surprises though. When I got to the lab at 6:30 am this morning the tech doing my labs literally had to go and confirm she could pull them all because of how much blood they wanted at once. From there I went to back to back CT scans, EKG, bone marrow biopsy, and then double MRIs.  My paperwork for a "guest" badge ended up being for a different part of the campus, and I got to do that twice, but am hooked up with the express entry pass to NIH - fun day.

Tomorrow turns to more of the generic base line screening and I get a free trip to the NIH dermatologist, ophthalmologist, and a long visit with the pulmonology team.  I really was not sure why I needed to be here for four days when I booked my ticket but I arrived at NIH at 6:30 this morning and it was about 6:30 pm when I was back at my hotel room for the night. They have filled my days!

The tests today confirmed I am a good candidate for the Dabrafenib and Trametinib trial. I am not officially accepted until all the tests are done and the drug company sponsoring the trial approves me as a participant (which I should have by Thursday). I got a call from the travel group today to book my trip back in two weeks so think my team at NIH thinks this is all going to start.

Assuming everything moves ahead as planned then on Thursday I get two weeks worth of chemo meds. I start on Thursday and take them everyday. It sounds like for most people the side effects hit further down the road and the first few months are generally not too bad.

The most invasive tests were today, so they behind me. I am tired, and sore but otherwise fine and glad to not be in limbo but to have things moving ahead. I'll let you know how the rest of the week goes!

Monday, January 15, 2018

New Year... More Treatment

I am really getting to hate even years!! They are when I have to start treatment again regardless of how long it has been since my last round.

I went back to NIH right before Thanksgiving. My counts were down but my doctor was really optimistic. Unfortunately the analysis of my blood showed cancer in it again ... then in December I had more labs that were about the same as November which confirmed the trend and that I was in the territory for re-treatment.

We are now debating trials... I could do ibrutinb which takes longer to work, but has fewer side effects, but would not likely get me to a complete remission. My other option is dabrafenib / trametinib (D&T). The side effects are a bit off putting but the efficacy is suppose to be much better.  Right now the plan is for me to do the D&T trial. If any of my doctor friends have experience with this one let me know!

All of the drugs under consideration are oral chemo drugs in a class called kinase inhibitors. My understanding is that they are targeted and do not cause stem cell damage like traditional chemo (which we are still trying to avoid for at least a few more years). The D&T drugs separately cause hair loss but combined the risk is less than 10%.

Only two women have been through the D&T trial at NIH so far and neither lost their hair... it is the side effect that is giving me the most trouble, despite a laundry list of others. I am on strike for cutting my hair until I know how they will impact me.

Those of you that know me know my hair is literally like a lion's mane - color, size, you name it.... I have never dyed it (and as someone going on age 46 am very proud of that fact). With the number of moves, illness, etc. I really should have more gray hair than I do. Am wondering if I could get it cut off and have a wig made with my hair.

In my immediate family, short hair is in fashion though. Katt still has Chad buzz her hair off twice a year because she cannot be bothered with it with all the swimming she does. Chad would love to have a bit more hair on his head but his genes have other plans for him.  So I'd have company....

We are working on setting dates for my start at NIH. I will be going to NIH every 4 weeks for a few days until either these drugs stop working, or they get approved by the FDA for my kind of cancer. It hit me the other day when the nurse at NIH filled out the paperwork for work and it asked about how long this treatment would last and her words were "no end".  Am struggling to realize this is my truth and reality....think that is why I've had  trouble about thinking about getting back into blogging.