I am scared

I was just diagnosed last Thrusday. Still going through tests to put me in a stage. So far it's 2+. I have borderline swelling of the spleen and liver. As I understand it that is advanced? I am just wondering has anyone been this bad and still live? When does it kill? How does it kill? I have been developing a cough too when I get over tired. Anything related to? I get the usual night sweats, fevers, itchy skin not the weight loss yet thankfully.
It'd be nice to hear someone's story.

CynTurek,

Welcome. My clinical history is well document here on the various discussion threads at this site, so you can trace them there. I will just state that I began at Stage III, although before a staging C-T, the docs thought that I was Stage IV.

Probably the best thing that you can do at the moment is to get certain infomation: A sure diagnosis (what type of lymphoma, since there are many dozens of types), and definite Staging (how widespread the cancer is distributed, and where). This may take a little time, and waiting is not easy, but only with this information can you know exactly what you are facing.

I hope your prayers are answered.

don

//

CynTurek-
I agree with Don that until you receive a precise diagnosis, you should try to keep a lid on speculating too much, since you're bound to find many reasons to worry and few to not worry, with any or none of them having any actual relevance to your own situation.

Advanced-stage Hodgkin's lymphoma is indeed treatable and even curable, but a wide variety of factors go before this, so perhaps for now just realize that even at advanced stages in which people have "been this bad", Hodgkin's has proven to be treatable.

Ross

The biospy shows that it is classical Hodgkins. Just waiting to get all my questions is the hardest part.

CynTurek,
I understand exactly were you are. You will do so well with ABVD and before you know it you will back to living. The being process of all of this overwhelming. I am 5 months post transplant (stem cell). It has been over a year and I am cancer free. Looking back it was so tolorable and the Lord was always there, forever faithful. I am praying for you.

CynTurek,
Every time you have a question, write it down on a sheet of paper and take this with you to your doctor. My Medical Oncologist was willing to field any and all questions that I had. I highly recommend this approach because ther are SO many questions rolling around in your head... Do not be afraid to ask any question!
Hang in there. Not too long ago, I had to go through all the staging tests and it can be very overwhelming.
Just know that you can logon here to this site anytime and you'll be able to get some pretty solid answers from people that have dealt with this before (or are dealing with it now).

Be strong, we are all there with you,
-Paul

CynTurek,
You are doing what is normal. Always remember that your involvement and understanding of this disease and treatment are vital to your ability to overcome. You can drive this disease from your body and you must believe it. I went through 12 rounds of ABVD fourteen years ago. You appear to be strong and able to overcome. Keep me posted please. Together we can overcome! Jack

congrats Jack I love to hear storys of ove comin this cancer, we to are going to beat it… and have come so far so quick… and much easier than we expected, the KEY is STAY POSITIVE AND KNOW IT WILL BE A FIGHT BUT A BEATABLE ONE

Hi cyn, It as been a wile since I posted. let me give you great news. my husband was stage 4 classic. his spleen was swollen to the point he was crying and he has a really high pain tolorance, and he had tthe cough for literally months prior, but thought it was allergies, as we had gotten a cat. NOT! He is doing super , he has had 11 chemos and has 5 more to go, has had 3 PET scans . the frst to stage him , the second to see progress and the third came back Clear ~ no cancer found any place... this was after his 8th chemo, the second PET scan showed that all the cancer had reduced by 1/2 to 2/3 after only 4 chemo treatemtns. after 11 treatments he has actually gained around 15 Lbs, and still has the majority of his hair,which has totally surprised us, his appitite is sluggish right after treatment but within 4 days he is eating anyand everything. Please do not sit in worry and fear, the C word is really scarry and so much of the time, we begin to scan the online info which then throws us into panic... and we look for the answers and rad so much info after a while you want to curl up and give up, but this cancer is really on the high cure rate. I do recommend packing full of pretein that was you do not lose as much stength anf not so weak feeling... hubby take the New Whey 42g of prtein fruit flavor... and he said he notice a huge difference once he took those, he doubles up on then the day before chemo.. just a lil helpful hint

Karen

My son is stage 3b and is responding remarkably to the chemo.He started with BEACOPP and is now on ABVD.The last PET SCAN showed no more active cancer!It is amazing how quickly improvements are seen.He was diagnosed in April,2010.He has 3 more chemo treatments and then starts radiation.We are starting to see an end to all this madness.It was so scary for our whole family.Our prayers are with you Cyn and we wish you well.

I had Stage IV Hodgkins with activity in my spleen and lungs. My cough was unbearable with a rash on my body. I had to get on sleeping pills, just to get a little sleep. After the 1st chemo treatment my cough went away. I was even chocking on food and the cancer was wrapped around my wind pipe. I finished my 12 treatment May 24th and really have been in remission since Feb. This cancer is so curable! I am back going to the gym and feel real good. Still get a little tired but that will get better in time. I think positive attitude has a lot to do with it and just try to keep going every day. There were a lot of days I didn't want to get up-but I would and even walked on the treadmill.

Hi Cyn,
I have Classical hodgikins, stage 2, bulky (tumor is greater than a third of my chest size) with side effects. I am 4 treatments in, still have a head of hair (although thinned a bit), and am getting a 2nd PET Scan to see the progress next week. I was diagnosed in April, did some fertility treatments, and started Chemo treatments in June.

(ask your doctor about this as fertility can be an issue depending on your age/treatment plan etc. The livestrong organization will even give you a grant for the meds if you want to do any harvesting)

You are going to do great- This is a great site that is full of good info and I am glad you have joined the group so we can all support each other through this.

kmelick-
bulky disease definitely applies to you, with a freakin HL tumor that big good god that’s big. You’re worried about your scan, naturally, but i’m curious if— since you seem to indicate you were maybe dx’ed as stage IIB ---- have you experienced a lessening of any of those B symptoms? What about the bulky site? Were you coughing or short of breath, and do you feel that’s changed at all? I ask only because I’m wondering if you can see or feel any of the treatments’ efficacy in the leadup to your scan.

Ross