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 last 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.

Wednesday, August 23, 2017

Where to start...

I have to start with what is most top of mind which is our family state of emergency last night.

For most of the night, yesterday was a normal school day evening. We had a nice family dinner. Everyone was quietly working on homework. The dog had been walked, laundry was done. Margaret was up in her room and Katt finished her homework and was heading upstairs around 8:30 when I heard her yell, "Mom, there is a bat in our house". 

I did not think I heard her correctly, or that she could be telling me so calmly that there was a bat IN MY HOUSE!!  Then it came flying down the stairs at me. I ducked and it went into the living room. OMG ---  there was a bat in the house. Chad was on a work call. I grab a broom, because I think I remember someone telling me they had shoo'ed a bat out of their house with a broom before. 

I quickly realized I needed help. I called to the girls to tell their dad he needed to get off his call we needed his help. At the same time, I knew Chad had no experience with a bat in a house from my past 20+ years of co-habiting with him so I called my neighbor who always knows what to do. 

Sure enough my neighbor had great advice - call Animal Control. I googled quickly, and put my tax dollars to work and made the call to the after hours number (which is now in my phone for quick reference). Then my attention turned to containing the bat. All I could think about was what if they get here and can't find it! 

We have an old house with high ceilings and pocket doors (that before last night we did not think we could close, but turns out in a pinch we can get them to work).  The bat would circle and then land somewhere we never figured out where. Luckily when the nice young woman from Animal Control arrived it was flying and she caught it in her net in about 30 seconds. She said it has been a record year for bat activity.... apparently we are in bat mating season now. They start to hibernate again in Oct/Nov, and we are counting down the days!!

This is the big excitement from my last few months. I took a personal leave of absence off work this summer to hang with the girls and to spend more time with my parents. It was a very full, and wonderful summer - lots of time at the pool, crafting, and hanging with family. The girls started school last week, and I head back to work Monday. 

For the last several months living with leukemia has just being "living". I did go back to NIH in May and my bone marrow biopsy showed the cancer was up from <1% in Nov to 20% in May. I was very disappointed by the results, but my doctor did not think they were too bad. I had blood work done last week and it was very mediocre so I am just focusing on getting the most out of every day.

I have a true"love - hate" relationship with follow-up testing. I like getting the data to know how I am doing but also dread what it may tell me. The anxiety that surrounds any type of testing is different once you have cancer because you have already had something rare, your brain can really create some elaborate scenarios based on some minor symptoms you notice.

I would expect I will continue to be horrific at doing posts as long as I am feeling good. End of November is my next big testing trip to NIH so hopefully will just have more life (but with less bats!!!) over the next few months.

Sunday, March 19, 2017

Take silence as things are going well

I have had a few friends email, or text, to see how things and mention I had not posted in awhile and it has been longer than I even thought it was. I continue to stay busy packing in as much living as I can. I do think when I am feeling good it is hard to make myself post. It really reminds me that I have leukemia which most days is sublimated below the rest of what is going on in my life.

While I am totally comfortable talking about having cancer, I do sometimes wonder if I have totally accepted it. I just looked up acceptance and it means you consent to receive something, I have never consented to have cancer. I understand the reality of my situation, but I don't like it, and it is most certainly not something I wanted. When I talk to friends who are newly diagnosed and struggling with the news, I know I am reconciled to the facts about having leukemia and what it means for my life and my families. Maybe that is as much as you can hope for....

I don't go back to NIH until the end of May for a couple days for lots of testing. In a weird way, I am looking forward to going to NIH. This is a long stretch for me without data. I am starting to second guess being tired and wondering if it is more than the impact of full days, and the measly one hour daylight savings change which threw my whole family off last week.

The last 4 months have been full of the girls activities, work, and lots of family travel. I used the time I had in a hospital bed last summer, and packed our schedule for every school holiday. It is the last year the girls are in the same school, and with Katt going into high school we know she can't miss school, or sports practices on the weekends. It hit a new travel crazy high for us a few weeks ago when Chad and Margaret were coming back from a father-daughter weekend and they came off the plane that I was getting on to head out of town. We had time for quick hugs and kisses, and a hand off of keys. We are looking forward to heading to the Grand Canyon and other national parks later this spring and hopefully in May I will get the news everything is still looking good and we can squeeze in some trips this summer before high school kicks off and then we know college visits will not be too far behind.