Doh……I forgot this bit. And the last post was so long I decided just to make a separate post.
Brain MRI is clear!! Yay!
I dread the thought of having something pop up on my brain. Sadly, it isn’t even because I don’t want anything growing in my brain but because I don’t want to go back on the horrid dexamethasone that is used to control swelling during brain radiation and keep side
effects down. I know how awful the side effects can be so I don’t think it would be possible to make it through treatment without some kind of drug assistance, but the side effects of dex are awful too.
All the water retention and muscle wasting. I am still working on rebuilding my quadriceps from my last round of dex but it is very slow going. Especially when simultaneously dealing with fatigue so it is tough to motivate myself to get off the couch. That’s definitely when having an elliptical at home is a good thing so even if I can only exercise for 5 minutes it is better than nothing.
I am hopeful that my brain will continue to remain clear while I am on Capecitabine as I have heard it can cross the blood brain barrier. It is a small amount that makes it across but I figure any that makes it has to be helpful.
Back to side effects, I am currently on the week off of my second cycle of Capecitabine. And it is the 3rd week of my 1st cycle of Lapatinib – technically the pharmacy deals in 4 weeks cycles but to make my life easy I am going with a 3 week cycle to match the Capecitabine.
On the scale of side effects, so far so good. I’ve had a couple of bouts of diarrhea…….and when my onc was telling me to stock up on super soft toilet paper and get the extra giant Costco sized boxes of Immodium (I buy the generic stuff, works the same and is a quarter of the price) I’d say a couple of bouts is pretty awesome.
There is still no sign of hand and foot syndrome. My hands may be slightly drier than normal but that could partly be a result of the colder, drier weather we have been going through. I certainly haven’t had any redness or cracking.
For the last few days I have been dealing with a couple of mouth sores. It started with general mouth sensitivity, no salty foods or vinegary foods (that really makes salt and vinegar chips a no go) or spicy foods – horror, the other day wasabi started to bother me, being a sushi fanatic that might be up there with no nose hairs as worst side effect ever. I hope it doesn’t last. I have also gotten sensitive to my toothpaste. I have been a Colgate Total user forever as I have always found it less tingly minty than a lot of other types but it still left my mouth feeling clean. Now it is too tingly for me so I am on the hunt for something even less minty. I am trying out some Crest type right now and it is okay, but it doesn’t leave my mouth minty fresh. Such struggles.
And, of course, since nothing is truly smooth and easy, part of the lack of minty fresh feeling could be related to my Bell’s palsy symptoms. For the last few weeks I have noticed that my tongue feels more wrinkly and the icky taste in my mouth is back. Plus, I have been getting the missing a part of my head feeling again. And I’m still deaf in my right ear, it hasn’t gotten worse, although I’m not sure there is a worse stage beyond totally deaf. It is reassuring that my brain MRI was clear although the scan was done before these symptoms came back in such force.
I am hoping the symptoms are actually because the lesion on my skull is shrinking. Often when cancer cells are dying it involves inflammation so if the cells are dying causing the area to be inflamed that may interfere with the nerves. On the positive side, I am not dealing with any headaches which were a pretty major symptom initially when the lesion was growing. That makes me think the symptoms aren’t a sign of progression but when I go to my onc appointment next week I am going to confirm the lesion can be seen clearly on either the CT scan or brain MRI so it can be monitored properly. I know the PET scan showed the area really well but I haven’t had one of those since last July.
Another positive thing, my T-Rex arm is really improving. The overall lymphedema has come down a lot…….even without compression sleeves or lymph drainage massage……. and I can lick my fingers! That also means I can get a glass or a fork to my mouth (for a while there using a knife and fork was pretty tricky as I wasn’t very coordinated using a knife with my right hand), I can hold the phone to my ear and write notes at the same time. All in all some pretty fabulous improvements. And I’m really close to being able to smear shampoo on my head with my right hand. Oh….and I am up to 3 shirts I can wear when I leave the house from the one I always had to wear. It is all just so exciting!!!!
It is still early days so I’m not seeing any side effects from the anticoagulants yet. I am concerned about the occasional nose bleed as I blow my nose a lot so it gets irritated on the inside and will bleed a little every once in a while. Actual nose bleeds would be really annoying. The other thing to watch for will be random bruising when I run into stuff as I stumble through life. As I said last post, at least I’m not falling down these days so that should keep major bruising to a minimum.
And my last complaint……I have a sore knee. I don’t think that is from anything other than just general aches and pains of getting older. I’m going to try to remember to take turmeric pills again. Turmeric is supposed to be a good anti-inflammatory. It’s also supposed to stop cancer but since I had progression while taking it I’m not so convinced about that. One can dream I suppose.
Alrighty, that is the end of my list of things that suck.
Wait, one last thing, if you can find it, watch CBC on Thursday, Feb. 23rd. They have a show on that will discuss a research project that has been going on at the Vancouver center of the BC Cancer Agency. The project is Personal Onco-Genomics or something like that, POG for short. My understanding is that involves comparing a patient’s normal DNA to the DNA of their tumour and finding the specific location of the mutation in the tumour that allows the tumour to grow. The researchers then look through all the known drugs to find the drug that works against that specific mutation. The patient I heard about from the trailer of the show was an MBC patient who ended up on some sort of diabetes drug and she has been “cancer-free” for at least 3 years.
I am going to be asking about this study at my next onc appointment, as pretty much everyone I know in the MBC community will also be doing. I have heard that the requirements to be enrolled are pretty strict, one being that a patient has either not received chemotherapy or has only received one line. I’m on my 3rd line now but it is still worth asking about.
Since I am talking about cancer research, I want to send a big thank you out to my awesome friend Grace who has been a huge supporter of the BC Cancer Foundation as a participant in the Ride to Conquer Cancer. It is through fundraising support that studies like the POG study are funded and while I may not be eligible it is still working to extend other patient’s lives.
Whew. Now I think I am done for a few days, I have now posted absolutely everything I can think of.
Enjoy the rest of Sunday 😃