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dioffe
New User
Joined: 04 Nov 2009
Posts: 1
Location: Chicago, IL
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 Posted: Wed Nov 04, 2009 7:23 pm Post subject: Satge 4 Hodgkins |
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| I was just diagnosed with Stage 4 Hodgkin's. Apparently I have some activities in liver and spleen. Have no idea what to expect, what are chances, and what are treatment options available.? Any info or stories of people who've survived would be very much appreciated. We are looking to start first two cycles of chemo next week |
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ChemoMan
Moderator
Joined: 04 Jun 2008
Posts: 1067
Location: South Australia
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| Posted: Thu Nov 05, 2009 2:58 am Post subject: Re: Satge 4 Hodgkins |
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Hi dioffe
We have 2 regulars here with HL aisha1 and cinnamon
Aishas story is here:
http://cancerforums.net/viewtopic.php?t=13397
It is ongoing as Aisha is still having chemo
Cinnamon has recently finished and as he had such a good response to the chemo decided against any radiation. His story starts here:
http://cancerforums.net/viewtopic.php?t=14793
Both Aisha and cinnamon will no doubt jump in to give some support. All I can add is that HL is the most treatable of all cancers and has been so for many decades. The chemo regime is very tough but the results are spectacular so take heart and don't get despondent.
keep us posted and good luck 
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1 |
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aisha1
Senior User
Joined: 30 Jul 2009
Posts: 198
Location: London
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| Posted: Fri Nov 06, 2009 5:49 am Post subject: Re: Satge 4 Hodgkins |
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Hello!
You may have guessed from my user name that I am Aisha! 
I'm guessing that you may feel a bit spaced out by this all and don't know what the hell is going on or what to expect. It feels a bit like you are living in a dream for the first 2 weeks or so, especially when they start treatment so close to diagnosis.
Anyway, are you having ABVD? Do you know the name of the chemo regimen that you are due to recieve? To tell you the truth, it's not too bad, and you see the results almost straight away. I had a very noticable lump in my neck and others that were starting along my collarbone and armpit but after 2 chemo's the size of the one in my neck had reduced by about 70% and the ones along my collarbone, I couldn't even feel any more.
You do have a tougher fight, as you have involvement in other parts, but believe me you will start to feel and see the affects of the cancer shrinking in the first few weeks, and this will give you a lot more positivity that you can actually feel, and not just a load of people in a forum telling you that you're gonna be ok!
You may have quite a few cycles of chemo and it depends on what your doctors think is appropriate, some people have chemo alone, some have chemo + radiation, some have one chemo, then begin another type, it just depends - your doctors will tell you what is the best course of action.
You will feel tired, that is a given fact. Everyone responds to chemo differently and you may also have stomach acid which is annoying, sick feeling sometimes, but in the next few weeks you will feel better. The doctors will check your blood count and they will watch your neutrophils which can drop and leave you open to infection, so be a bit vigilant but not panic stricken!
We have a few people here that also have come through stage 4 and are doing well. One is called Badri. Another is called Simon. If you can check them out, they can provide a little more of what to expect as the cycles progress.........
Apart from that, at least you have a diagnosis and you can begin your fight. At least the doctors know what they are doing and the medical field have been doing very well in the fight against Hodgkins for a long time. There are so many of us who are still alive and well years after the chemo. I bet you will be one of them!
Good luck and post back if you feel up to it.
Aisha
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young  |
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cinnamon
Regular
Joined: 02 Nov 2009
Posts: 22
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| Posted: Fri Nov 06, 2009 6:33 am Post subject: Re: Satge 4 Hodgkins |
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dioffe,
First of all, welcome to the forum. I hope you'll find the conversations in here as useful and as comforting as I have. It's been great therapy for me.
Hodgkin's?...I take it you've been officially daignosed and been through the CT and PET scans and all that sort of thing? Also assuming a biopsy of some sort has been performed and you've received the results back.
I was diagnosed as being in Stage 2-B. 2 sets of nodes swollen but had symptons whatsoever. One lymph node swollen was in the neck and the others behind my breast plate, almost directly next to and over my heart. Also found out later that I had one swollen with cancerous cells right beside my throat. Everything was above my diaphram in my case. That's important because that's a good thing. However, when items are affected below the diaphram, my oncologist told me that this is not the end of the world either. As ChemoMan says..HL is one of the most curable forms of cancer that there is.
No, there are no good forms of cancer but if you're going to be striken with it you may as well have the one that has a very high cure rate.
So tell us a few things about yourself if you don't mind.....Were you having any symptons? I found mine through a normal check up I decided to have after not having been to the doctor for 15 years for anything. Thought I was as healthy as a horse! I thought that at 46 maybe I should get a little periodic maintenance performed on my old butt...LOL
How about age? HL is famous for hitting early ages and later ages...(not sure why it decided to hit me at 46...LOL)
In my case I was fortunate enough to be referred to an Oncologist that would later suit me to a tee. My general surgeon referred me. The guy who did the biopsy.
My Oncologist, a woman of about 5 foot in height, a very skinny build, gray hair, eye glasses, and a mean temper when I would get out of hand and say I was going to quit my chemo (This actually happened one time and I decided I wanted no part of her mean side any more...ha, ha). Anyways, she put me under a regiment of ABVD chemotherapy. Told me I was to have 6 full cycles with possible radiation therapy follow-up.
End result...4 full cycles and no radiation. In remission now.
What to expect?
Are you getting a PORT for the chemo to be injected in? I did not and as a result my veins experienced some tremendous discomfort. Part if that regiment is very hard on the veins if injected directly into them. In fact, I still have some mild bruising from two sessions that I had done back in September.
Fatigue was my #1 issue, although the one thing I learned was that chemo affects everyone in a different manner.
When I first started everything I was told all of what to possibly expect as side affects. I damn near died over the thought of all of that happeneing to me. Fact was though, I only experienced a fraction of what I was told to possibly expect.
I lost about half of my hair. My hair's so thick though that most people never noticed.
I was fatigued a little or a lot depending on where I was in my two week cycle of chemo. Ususally the day of, and the day after chemo I was ok and good to go...the next several days were tiring and at times, lifeless, but, as the days went on I would regain energy. By the time I was into my 6th - 7th day of that treatment then I would regain enough energy and motivation to carry on as normal.
One thing I had never experienced in my life was constipation. My goodness!...2 dasy after atreatment everything stopped, if ya know what I mean. This was directly attributed to my chemo and lasted about 3 days. Milk of Magnesia became a very close and personal friend of mine during those times... )
Smell....I developed an acute sense of smell. Odors affected me greatly. If I smelled something that was not good to me I would just shudder!
In the beginning of my treatments I was given a shot of Nuelasta on the day after my chemo. This was to aid in the reproduction of my white blood cells. This stuff just made my bones literally ache, my head hurt, and feel miserable all over. I am told that others feel little no side affects of this stuff but for me it was a living hell for 2-3 days after the shot. After 3 treatement however, the doctor let me try to go without the shot and low and behold we found out that body was rebuilding it's white blood cells all on it's own. That was a big step for me.
Never did I ever feel sick to my stomach or anything like that. The meds they gave me for that sort of thing were very effective.
Appetite?....OH YEAH BABY!...the steroids in my regiment of chemo just absolutely triggered my appetite. If it looked like food, well, let's just say it wasn't safe in front of me. I craved fruits and veggies. I craved ice cream. I never lost my taste for red meat, which I had been warned that I would probably would, however, my love for Mt. Dew went right out the door. Hated it! Tasted like goat urine...not that I've ever had that but I can only imagine that's what it would be like!
So you see, chemo can affect everyone in a different way. I never missed a day of work. Others need to take days off at certain times. Although I ahve to admit, I would go into work at 5:00 am and byt he time I arrived home in the afternoon I would need at least a 15 minute power nap to get me thorugh the rest of the evening.
Depression - Yep, never been depressed a day in my until about 3 cycles into my chemo. I didn;t realize I was just a bump on a log and not doing anything. Feeling sorry for myself. Hating chemo and hating life. I brought this up to my oncologist and she very gently asked me if I thought I was depressed. I firmly told her "no". Well, she was right to make a long story short. However, once she made me realize this I was able to get butt jump started and do the things I had been doing and quit feeling sorry for myself.
Make no mistake, ABVD chemo is no cake walk. It is a very harsh regiment of drugs...however, it is very effective and life is manageable while on it. I can't say it's a run through the park, but it's manageable enough that one could at least walk through the park at a gentle pace. You may need a nap when done but by golly you could still do that walk.
Accept what you have. Put yourself into the mindset that you are going to fight this thng and come out on the other side. It is a very humbling experience and you will see things differently after going through everything. But here's the key....Do what the Doc says and the overwhelming odds are on your side my friend. A positive attitude will help your body more than you know.
Good luck and please, keep us posted. |
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