I wasn’t quite sure where to go with this post. I was planning to do a quick catch up on how things have gone since I completed my 1st set of Capecitabine pills and I am finishing up my week off. Then I had an appointment yesterday that really did not go the way I expected.
This is the post I will share on Facebook as I am going to keep it focussed on how treatment has been. That is the most important stuff. I am going to write another post discussing yesterday’s appointment and if you want to read about it and probably see me rant and yell you will find the post on my blog home page.
So…..I made it through the second week of Capecitabine pills and this is the end of my pill-free week. I made it through the entire 3 week cycle without any new side effects. (!!!!!) I am also seeing some improvement with my elephant arm…..it has recovered from the small pox. There are the random shooting pains of dying cancer cells and I get the occasional weird tingly feeling that the lymph circulation is starting to improve.
The swelling has decreased from the very tips of my fingers and I am getting some motion back in my hand. I am thinking of changing the diagnosis from elephant arm to T. rex arm…..
The lymphedema around my elbow is such that I can’t bend my arm properly. That means I can’t use my right arm to hold the phone to my ear, bring a fork/cup to my mouth, shampoo my hair, scratch my ear……you get the idea. It really makes eating peanut butter really tricky, I always manage to smear it around while I’m coating the toast or the apple and I can’t even lick my fingers. I wish the swelling would go down faster but at least my arm doesn’t ache like it did while the progression was going strong. And I’m left-handed, that does make my life easier 😛
One thing I did forget to mention in my last post was about my CT scan results. I had the scan done after I already knew there was progression but before I started on the Capecitabine. There were a couple of new spots found on my lungs, 2 maybe 3. I already knew there was progression so I decided not to get all in a tizzy about it. The CT also showed the narrowing of a vein near my shoulder which leads to concerns about a possible blood clot.
To check for a blood clot I had yet another ultrasound. That was a rather awkward experience since I had such limited motion in my arm and shoulder and the bumps from the skin involvement were extremely sensitive to any touch. And any skin without bumps was tender due to the excessive swelling from the lymphedema. Fortunately the tech only had to scan around my shoulder and not my entire arm so the torture only lasted for about 20 minutes instead of 40.
No clot was found but I still wonder if I should be going back on blood thinners until all the swelling goes down. I believe the narrowing is in a deeper vein which would be a bad place for a clot. I have been drinking lots of soda water to prevent mouth sores so at least I am staying hydrated which keeps my blood pressure up. I can only hope that is all helping to prevent any slowing of blood flow through the narrowed area thus decreasing the possibility of a clot. That is probably a load of hooey and it is just luck that I haven’t gotten a clot yet but it is nice to pretend that I have a little bit of control over something.
The other exciting thing I have had to do over the last couple of weeks is get enrolled in the inReach program in preparation for starting the Lapatinib (Tykerb). Lapatinib is not covered under the BC drug formulary so it is not available through the BC Cancer Agency. Instead, patients are enrolled in the inReach program run by the drug company and the drug itself is mailed out by a pharmacy in Richmond. It is also possibly receive the drug through a local pharmacy but with the mail order thing I don’t have to be in charge of ordering refills or going to pick the drug up, the pharmacy does all of the organizing and mailing for me. For patients that do not have extended health coverage the inReach program also helps to cover the cost of the drug, which is about $4000 per 28 day cycle, on a sliding scale based on income.
The enrollment process wasn’t difficult. My oncologist sent the program a form and prescription and then someone from the program phones me to get all my insurance info. The phone call takes about 45 minutes altogether as it involves a phone to the extended health company to confirm what if any coverage I receive through them. I was fortunate yet again as with Ian’s and my dual coverage the cost is fully covered. This process was essentially identical to the one I went through when I was enrolled in the Victory program while I was getting the neupogen shots.
I received my 1st cycle of Lapatinib today. The pills are slightly larger than the average calcium pill and I have to take 5 of them once a day, either an hour before or an hour after a low-fat meal. I did confirm with the pharmacy that fat interferes with adsorption so it is important follow the low fat bit. Officially a low fat meal is classified as 500 calories with 5% of the calories coming from fat. That is pretty intense. My idea of celery for lunch sounds better and better.
Since I had the pills I took my first dose today although I was probably supposed to wait until tomorrow after I see my oncologist. The biggest side effect appears to be nausea and vomiting after taking the pills so I decided to take a dose today anyway and then I can let my onc know if I have any immediate adverse effects.
I will also find out tomorrow if my blood work looks alright so I can start cycle #2 Capecitabine tomorrow evening. I certainly hope I get the green light since there has been improvements but I know it is not uncommon to have to delay an extra week due to low neutrophil counts.
That’s all for now. I hope you like the new blog.