keskiviikko 11. toukokuuta 2016

Whats up with Nivolumab today?

Time for a recap with the biological med Nivolumab (Opvido) that Ive been using a little shy of 15 months now. 

Whats the most important thing to note about it? I can live. Not just survive, but actually live. Im back at school with a new field, to which I applied a little after getting Nivo, since I was quite certain that Id actually be able to attend school, I felt like I had realized I didnt just have on calling, which was being a nurse but my condition makes me a bad candidate for actual physical work in that field, and the other calling is studying the very thing I do on my free time: social media, graphic designing, web designing, photography, photoshopping and also marketing in these fields. Ive also got a better handle on my lifein the sense of being able to make plans, longer  than just couple weeks ahead, but for months! Ive also met my other half, out of the blue last summer, so Im pretty blessed, I think.

But not everything is all roses, Ive developed some side effects which dont prohibit the use of Nivolumab, but do need treatment and keeping a close eye on. Recently I was diagnosed with thyroid issues, which require thyroid medication in order to get the levels back to normal. Symptoms manifest as being tired, dry skin and itchiness (like being atopic and having Pityriasis Licchenoides Chronica isnt enough!!!), shortness of breath, heart palpitations, sweating, mood swings, bloating and so on. The list is long and some may be also caused by something else than directly a lazy thyroid, like a ripple effect, but many can also ease when some of the issues related to thyroid are solved. Currently Ive been on thyroid medication for about a month, and now bloodwork is showing signs of over working instead of being being lazy. 

My IBS has fluctuated the whole time from difficult to easy, and Nivolumab may have some play in it, causing unnecessary inflammatory reactions which manifest depending on other things like what Ive eaten, am I using any other meds eg. painkillers, stress etc, and these can go from diarrhea to not being able to go, stomach cramps, the need to eat even though Ive just eaten, food reactions, tummy feeling nervous. This is an extensive list also, which Ive somewhat learned to juggle these past years, sometimes good, sometimes not so good. Even without a previous tummy condition Nivolumab itself can cause inflammatory effect which can be so severe that they even force you to quit Nivolumab. But I consider myself still being on the good side. A diet suiting my needs keeps everything better most of the time. Ive developed two food allergies during the past years due to my cancer treatments which are fish and asparagus. I also always choose lactose free products since lactose seems to irritate my stomach if used regularly, small amount every now and then are okay. I also consume mostly oat, and try my best to stay away from other grains, tho these in small amounts are somewhat okay too nowadays, couple years back I had to quit rye bread since it was real harsh for digestion, and avoiding white flour in daily use also eliminate a lot discomfort that I used to have. 

These I think are the main issues, tho these make a pretty looong list when you look at it. This is quite a balance act, but so has my life been before I started with Nivolumab, so its nothing new whilst sometimes very, very tiring. Considering all this, I still am grateful to have been the first patient in Finland to receive Nivo for HL treatment, and am so glad that a few other patients since have gotten it too!   

What has been achieved with Nivolumab

First of all, the big, gaping open wound I had on my left side, starting about 10cm after my armpit, closed completely after 2 (!!) IV treatments with Nivo! It was amazing considering it had opened up for the 3rd time and surgery didnt help. Radiation did but this spot had already gotten so much of it since it opened for the first time, so it was being in between a rock and a hard place on what to do. But Nivolumab solved the problem, and now the activity of that lymph node that caused this open wound, has gone way down and and it was shrunk size wise. On that note, all of my other tumors, 4 including this under my arm pit, have shrunk and show only little activity anymore. So, in a sense Ive achieved a very calm state, HL being halted and keeping it on the down low.  

Nivolumab has given me a new chance on life, and while I still battle finding ways to keep up my stamina, to get enough sleep, dealing with chronic back aches and such, Im still doing so much better after a long time of not doing so great, and being uncertain what the future holds. Now I know what it at least holds: me graduating, doing part time work, being a volunteer worker at Sylva for various projects, telling my story in order to help others, being a peer support person, being a girlfriend, aunt to my little niece whos coming to this world soon, during May!, and so much more. 

I hope to be able to travel more, meaning further and longer. I hope to be an inspiration for those who struggle with cancer or some other chronic illness but also note that were just human, its okay to not be on "full mode" all the time. Id really much like to own a house someday with at least a little garden space which would give my dog companions room to run free, and have all kinds of backyard stuff from garden to grill. Basic things, little things, that become The Big Things.