Patients Helping Patients Blog
Personal Treatment Decisions…Living with Metastatic Melanoma
Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.
I had a mole removed on my lower left back in early Dec and the biopsy report was melanoma. My mole was removed later in the month followed by a month of interferon treatments in February. I started Interferon once weekly in April and it’s been hard to keep my spirits up because I feel so bad from the treatments. But, everything is okay and seems to be getting better.
The journey to “no evidence of disease” (NED)
Received my second injection on Friday and felt like I was getting the flu about two hours later. But to my surprise no fever, chills, or fatigue Friday night or all day Saturday so far.
I think these treatments are building up in my system. The day and day after the injection feel like I have run 100 miles, tired and fatigued. Night sweats with this last injection (hate those darn things). Also had a PET scan 8-15-2015, now the waiting until 8-22-15 to get the results.
As each day comes to us refreshed and anew, so does my gratitude renew itself daily. The breaking of the sun over the horizon is my grateful heart dawning upon a blessed world. ~Terri Guillemets
Got the PET scan report today along with the CBC. Doctor said my blood work is the “Normal” low for the interferon and that is good because it shows it is working. Hopefully by end of March 2016 I will have completed the yearlong treatment. Seems so far away, but the last few several month of treatments have gone by quick. Also the PET scan came back clear. What a relief…Now on forward to the next three months until the next scan. Thanks to everyone for all your support. Hope everyone’s week is great and have a good weekend.
(Going to Sea World this weekend with my three year old granddaughter. Hope I can keep with her, she really loves Sea World and is all excited about going.)
I have not been on the last few weeks, I have a new medical condition with a little information about it:
Phantosmia…. is an olfactory hallucination: a person senses smells that aren’t really there. These imaginary smells can range from unpleasant to enjoyable. Phantosmia can develop into olfactory delusions, which is when a person is constantly affected by these sensory hallucinations. A few diseases and afflictions can cause phantosmia.
I smell smoke 24-7 and it really makes me sick. It is like someone is blow smoking in my face all day. I get an upset stomach, burning eyes, weak, headaches, cannot focus (vision) on objects and have the constant smell of smoke. Not a smoker here, so I think it makes it worst for me. I wake up around 2am smelling smoke then cannot go back to sleep. Doctors have schedule me for MRI’s on my brain to see if the melanoma might be spreading and also have to have a test run to see if I am having seizures which could be causing this symptom. It looks like I am trying to get all my medical problems done in this year. I told the doctor, that next year I should be in great condition. Right now they are saying I am NED and my last scan came back good. Also they have stopped my biweekly treatment of the interferon for the next month. The doctor wants to rule out that the interferon could be causing this also. Well that is the latest in my journey for now. Will try to write more often. Thanks for the support.