New To Town

Christopher_

Hey all,

I've been lurking around the forum for a shortwhile after I was just diagnosed with Stage 4 Hodgkins Lymphoma.

I'm not so sure what to say so I'm going to go through my story so far - with telling your story being therapeautic and all.

My first symptoms came upon when I was Studying in Japan last year - Tiredness, Wieght Loss (around 10kgs), Night Sweats Ect and weirdly extreme Sinus pain but I'm not sure whether that was related or not because it cleared up along with the night sweats. I saw probably in excess of five doctors while overseas and I was allways diagnosed as "stressed" or as "having allergies".

When I got home I saw my local Doctor who ordered a range of blood tests and from that a few days after my appointment on my first day of my Nursing Course I got a call from one of the Haematology Doctors telling me to go to the Emergency Department. From that point it took about two weeks for my official Diagnosis came in.

Now at this point in my Journey I'm on day 7 of my BEACOPP treatment (allthough Oncovin has been removed from my treatment because of a condition called Miller-Fisher Syndrome I had when I was younger).

I'm handling the treatment pretty well, I haven't had any really inconvenient side effects except for that of losing my tast mid-treatment and my hair. I haven't had much fatique either because I have the option of a blood transfusion day 4 (I dont drop so low that I NEED it, but I take it because of how much it perks me up). On day 9 I also have PEG-GCSF, which I hate the most out of everything because of the bone aches but I manage it enough with Tramadol. I don't like to take anything that makes me to goofy.

Anyway apart from my rantings above I've just been coping with this as best as one can at eighteen, I make fresh Juice everyday and try to exercise daily. I usually do atleast an hour a day now, which is allmost sad because I'm fitter than before I was sick. I have a PET scan in the next week or so too, to see how I'm responding to treatment. I'm hoping it'll be promising especially seeing that my haematologist last appointment said all my nodes had gone down and the fluid round my lund had decreased. *fingers crossed*

I hope everyone else on this forum is doing well and I'd love to hear from you all.

P.S
Sorry for such a long rant.

Michele23

Welcome
Hi Chris,So very sorry you have the need to be here yet at 18.That's just far to young to be dealing with all these issues.I do not have Hodgkins but have read about people who have lived cancer free for many years after treatments.Lets hope this will be you.Strange how in today's world it takes so many drs to find these diseases.I went through the same thing 5drs.Never easy to lose the hair but your at least in style.Women aren't so lucky.Just wanted to say hello and sent you good strong vibes for easy treatments.Take good care,Michele Dx1995 Follicular NHL stage3

miss maggie

Welcome
Dear Chris,

Sorry about the late DX, and having to be here.

First, let me say, in our DX, stage 4 doesn't effect the ourcome. So not to worry. Great news
your nodes and fluid around your lung have gone down. That's a great start.

I am a bit confused about some of your abbreviations. Please explain what Miller-Fisher Syndrome is? PEG-GCSF? and what is Tramsdol?

Stay positive. Love Maggie

COBRA666

Hodgkins
Chris,
Like Maggie I am not too familiar with a few of the abbrev.,but they are coming along with new things all the time and it is hard keeping up with all of them.We all know your concerns because we have all been just where you are now. Do you have Hodgkins or Non-Hodgkins lymphoma? Just letting you know there is a difference,even though long ago it was all called Hodgkins Disease. Now it has been divided into 2 separate things and then sub-divided into classes. There are so many avenues to take for treatment for it all. I know it is all so overwhelming right now,but get all the info you can about what your diagnosis is and we can help you with what may be next and so forth. Anyway welcome to the site you never thought you would visit. There are some great people on here that are behind you and will see you through this. John(FOLLICULAR NON HODGKINS GRADE 1-STAGE 4-REMISSION

Christopher_

miss maggie said:

Welcome
Dear Chris,

Sorry about the late DX, and having to be here.

First, let me say, in our DX, stage 4 doesn't effect the ourcome. So not to worry. Great news
your nodes and fluid around your lung have gone down. That's a great start.

I am a bit confused about some of your abbreviations. Please explain what Miller-Fisher Syndrome is? PEG-GCSF? and what is Tramsdol?

Stay positive. Love Maggie

My poor use of abreviations and spelling.
I mispelled Tramadol which is the painkiller I use for bone aches with my PEG-GCSF (neulasta I think it's called as its generic name, I had to look that up because my doctors use the abreviation).

My Miller Fisher Syndrom was an illness I had when I was about 13 where the myelin on my brainstem was striped due to an automimmune reaction. So back then I lost control of most of my body and ended up in ICU, I think I spent almost a year recovering from that. So really I'm no stranger to illness, not to mention the bladder stone they found last year which was the size of 2or so eggs. But digressing my haematologist was unsure about how the oncovin would be seeing as one of it's side effects can be with nerves so removed it from the treatment shcedule


Thanks for the warm welcome!

miss maggie

Christopher_ said:

My poor use of abreviations and spelling.
I mispelled Tramadol which is the painkiller I use for bone aches with my PEG-GCSF (neulasta I think it's called as its generic name, I had to look that up because my doctors use the abreviation).

My Miller Fisher Syndrom was an illness I had when I was about 13 where the myelin on my brainstem was striped due to an automimmune reaction. So back then I lost control of most of my body and ended up in ICU, I think I spent almost a year recovering from that. So really I'm no stranger to illness, not to mention the bladder stone they found last year which was the size of 2or so eggs. But digressing my haematologist was unsure about how the oncovin would be seeing as one of it's side effects can be with nerves so removed it from the treatment shcedule


Thanks for the warm welcome!

You are very welcome
Dear Chris,

Thanks for the explanation of your abbreviations.

Even though you say "you are no stranger to illness". I am truly sorry you had to start your youth being ill. Hopefully you have no side effects from Miller Fisher Syndrome.

Even though you started so young being ill, it's not really fair. Does, it make you stronger?

Love Maggie