Hair loss, Joint swelling and rashes, sore legs, headaches and im soooo tired. Not fun. I have my next scan on Thursday looking forward to it.
Life goes on
Life is plotting along nicely at the moment. I am working full time and im trying to be as positive as I can playing the waiting game.
Apart from headaches and fevers I haven’t been doing too badly. I have had breakouts and skin rashes but they seem to go as quickly as they come.
My next scan is in 5 weeks and I cant wait. Its a PET scan! Yay! I love me a good PET CT Scan. Haha.
I have also started Exercise Physiology to try and get my strengrh back up. Mostly pilates based exercises which I enjoy.
The hardest thing is getting motivated to do things when your constantly walking around tired and with a throbing headache. A physio friend of mine suggest dry needling in the upper back and lower neck. Atleast if that doesnt work I know the headaches are a side effect from my meds and not a tension headache.
On Sunday I met another Melanoma fighter. She is in her mid twenties! It was so great to meet someone closer to my age as we have similar concerns and worries. As she said we havent even lived out lives yet and have to deal with this! I really could relate to her and it was great to swap stories and treatment plans, as weird as it sounds. She is also a BRAF positive Melanoma fighter. Just to show how bizzaar this Melanoma is the targeted treatment im on and that is so far working to shrink my tumours didnt work at all for her. I guess thats why its so hard to find a cure everyone is so different and unfortunately its a matter of trial and error for everyone. Sucks!
On a totally unrelated topic I am trying out a new hair colour! What do you tink? Lol xxxx
Berry to kill cancer
I have stumbled across this video on facebook. Im speechless. How do I sign up?! Amazing what nature can offer us isnt it. It will all come down to funding now 😦
https://m.facebook.com/story.php?story_fbid=10153890864569072&id=329710559071
I hope the link works xxx
Another Oncology Appointment
​So today I had a follow up appointment with my Oncologist. My bloods taken on Saturday are all looking good. My kidney/ liver function is also good. No concerns there. Woot woot !
I also get to halve my steroid dosage for 5 more days then stop taking them. If my fevers start up again I need to go straight back on them.
I asked my Oncologist today if he can tell from my last scans how long these meds may work for. He cant say. He said for some people they work for 6 months, others have been on them 3 years. Lets hope im on the 3 year end please xx
I also asked if there is any chance I will be able to have children. He was quick to say I wouldnt be able to as the melanoma is in my ovaries. I also asked about adoption but he suggested against it because he could not tell me how long my life would last. It seems everyone is having babies or sharing Facebook photos of their kids. Its so hard knowing I may never have that.
So many unknows with this vicious poision it drives me nuts!
Tonight I also had my first exercise physiology appointment. Wow I cant believe how much my fitness has suffered through all this! I am keen to get my strength back and I hope soon the gyms will allow me to join, however I wont be doing any pump class soon.
Fundraiser for Violets and Lace
So excited! On Saturday night my husband organised a fundraiser through his Rugby Club for a beautiful local charity called Violets and Lace. Violets and Lace aim to educate people and and spread awareness about Melanoma. You can check out their website violetsandlace.com. Debi and Brionney the founders of the organisation attended and I got to meet them both for the first time. They are both beautiful ladies. Debi lost her daughter to Melanoma a few years ago and her story is eerily similar to mine. I feel for her xxx
I am guesstimating we managed to raise about $10k! Although I am still waiting on final figures from the club. The ‘Burdekin Ruby Club’ home of the canetoads are an awesome bunch of blokes. They were all so generous and supportive it brings a tear to my eye just thinking about it.
DownerÂ
Feeling pretty down at the moment. Although I have people all around me for support I am starting to have doubts and feel alone. Its a strange feeling. I know I need to stay positive.
I was thinking of joining a support group so I can talk to people going through the same thing. Its hard Melanoma is such a lonely cancer. If it werent for “The Melanoma Man” and the ladies from Violets and Lace I would never have been connected with people who are going through the same stories as me…
It couldn’t be helped
As i sit here watching TV relaxing and scrolling through Facebook I come across so many posts that just show we are so uneducated about Melanoma and how serious it can be. I guess I would be that way too if It wasnt happening to me.
Melanoma is not just skin cancer. It doesnt just show up as a freckle and it is not only caused by the sun.
People ask me why I would go out in the sun and allow myself to set sunburnt when im so fair. News flash, my Melanoma is not caused by the sun. My is a gene defect. Please people dont judge.
What a week
On Friday I was admitted to hospital with temps over 40 degrees, dizziness, nausea and headaches. I spent days undergoing scans and tests and it turns out they are all side effects from my medication.
5 days on and the temps stopped but I could not shake the head ache. The staff at the hospitals have been great and I have seen my oncologist a few times too while I have been admitted which is great!
I got some amazing news! Although my side effects are crap ALL MY TUMOURS HAVE SHRUNK! All of them! I could not be more over the moon.
I know I have a long way to go and my cancer is aggressive and will more then likely pop up in other spots but I feel like I have had a major win! Go me!
I get to leave hospital tomorrow, I have started back on my tablets and will have a few days on steroids and antibiotics but bring it on! Woohoo
30 days on Treatment
I had another appointment with my oncologist yesterday to discuss blood test results. My liver/kidney function is normal as is my blood count. This is all good news so treatment continues.
As far as side effects go they are starting to kick in- Ive broken out in a pimple like rash on my face. This is really bothering me and I feel self conscious. I have started an acne treatment for that so hopefully that will help. My friend did some research for me and this treatment is meant to be the number one in Australian! I have also been getting headaches, my body feels sore all over and im tired alot of the time. But no major side effects at thia stage.
I started back at work 2 weeks ago and its been good to keep my mind on something other then Cancer. I guess thats the best part about this treatment it’s all just tablets so it’s saving alot of travel time!
In 3 and a half weeks I have another CT scan which will show if my Melanoma has shrunk/stop spreading (fingers crossed) or if the treatment is not working.
I will keep you posted xxx
So far so good
So recent blood test results show that my treatment meds Tafinlar & Mekinist are not having any adverse effects on my liver or kidney and that my blood cell count it normal. Winning!
As far as side effects go 2 and a half weeks in I have a sore back and stomach but I cant tell if that’s from the meds or surgery as suggested by my physio.
My left arm feels tight and swollen lately so its time for that compression sleeve to come back on xxx
I will have another PET scan in about 4 or 6 weeks to check if the treatment is working. Fingers crossed. I want shrinkage!
In exciting totally non Melanoma related news my sister-in-law had a baby girl last night. I’m so excited! hehe
My Melanoma Story 