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Old 05-17-2007, 12:09 PM   #1
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Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test


Hello. I'm new to this board, as well as new to "cancer."
It's all rather overwhelming. I had a collarbone lymph node taken out last Fri.--and am experiencing shoulder pain...but, have had shoulder pain since Jan. & just assumed it was due to working-out too much & putting strain on my shoulder joint. My ENT has diagnosed "Hodgkin's" (yesterday) and has assured me that the shoulder pain and my lymph problem are not related. I'm worried sick it's in my bone(s) and am experiencing lots of anxiety from this whole ball-of-wax.
My heart goes out to each and every one of you...I realize we're all in this together....but, I'm in my early 50's, and I'm certainly going to give this battle a run-for-it's-$$$. I seem healthy, otherwise...but, lying in bed at night & going over scenario after scenario, is probably not the healthiest thing to do.
I guess I just need some reassurance from you wonderfully, strong people out there, that I'm not alone & with a good plan, my Hodgkin's can be beat.
At this point, I do not know my "staging" ...I will find that out next week. To top it all off, I'm a professional singer & have to take the summer off (doctor's orders) which I have mixed feelings about. I'm taking this time to do some focusing on myself, which I haven't done in years, due to my career & my aging parents that depend on my sister and me.
Thanks for listening & please, let me know any encouraging thoughts.

Last edited by singer78; 05-31-2007 at 07:21 PM.

 
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Old 05-17-2007, 01:47 PM   #2
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hello Singer78,

First I want to express how sorry I am for you. But, this is a cancer that can be beat.
Can I ask you how big your lymph node was that was taken out? Did you have any other typical lympphoma symptoms, night sweats, fatigue, fever, itching?

Take care,

Debbie

 
Old 05-17-2007, 01:58 PM   #3
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hi Debbie...thanks for your response.
It was a supraclavicular node, right side--2 cmm. at largest. They gave me the detailed report, as to what cells are positive, but it's all "jibberish" to me. I realize months/years ago, after a really bad virus my husband & I both had, that I never "fully" recovered...and due to my overwhelming schedule, I didn't take time to realize what was going on in my body, until it whacked me over the head! Anyway...I guess at one point, I probably "did" have some of the symptoms, but they've faded away. Now, it's mostly nervousness-- over the unknown, and shoulder pain. That's why I'm worried about it possibly have gotten into my bone(s). I also had (during menopause) a weird phenomenon, called "burning mouth syndrome." I've been wondering if these things are all related. I see my Oncologist next week, after some more tests, but until then I'm somewhat immobile. This is my first posting on any "boards," and I'm thankful to be able to vent. I already am feeling a sense of calm.
Thanks.

 
Old 05-17-2007, 02:16 PM   #4
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hi Singer78

Wow - your attitude it fabulous and I'm sure that will see you through and you'll sail through whatever treatment you have (I believe the norm is CHOPP or ABVD - I had ABVD). Hodgkins Lymphoma is - by all accounts - the one to have!!!! They talk in terms of cure rates rather than remission with this disease.

Keep the attitude, keep singing (if not professionaly then certainly to entertain yourself) and you'll be "in full remission" in no time and "cured" sooner than you know. Keeping positive and taking every opportunity to laugh out loud, I found , makes the whole process so much easier.

Soon you'll be in the same position as me. Full of energy and getting on with everyday life!!!

Take care of yourself

Ails xx

 
Old 05-17-2007, 02:29 PM   #5
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hi Ails....This is just great. I think the replies from you 2 wonderful people, are better than any "drug." I SO needed to hear some positivism & this board is full of good wishes & hope. I guess Barbara Streisand said it best..."People....people who need people....are the luckiest people in the world..." So true. I've already found myself looking at life differently. Now, I have some new friends to send some warm thoughts to. Thank you. I so appreciate you! Every day "is" a gift, isn't it?

 
Old 05-17-2007, 02:40 PM   #6
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

It certainly is a gift!!!

Keep your attitude, like I say, it is fab and it will make this easier!! You sound like a fantastic person - very positive and up-beat. Keep that, remember to laugh and you'll do just fine

If there's anything you need to ask or anything I can help with then let me know. Don't be offended if you don't get an answer from me straight away. We're on opposite sides of the Atlantic so I might be in bed!!!

You can beat this, no problem!!

Ails xx

 
Old 05-17-2007, 03:01 PM   #7
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Thank you...I do have a question about "why the bone biopsy" test.
I've had full body Ct scans, mammograms, soft tissue Ct scans....now, the Pet scan, and a "possible" bone marrow test. Like I mentioned earlier, my shoulder has been bothering me for months (same side) & I'm so worried my problems are more extensive than I thought. Will the Pet scan show any "bone" activity, or does it totally focus on lymph node activity? I tried to ask my doctor yesterday (ENT) but, he had other patients & only gave me so much time. The Internet is full of info, but sometimes I find myself with "too much information" and a boggled mind.
I know I'll find all this out, sooner or later---but, it's been 6 weeks of testing, to this point...and I still don't know exactly what I'm up against. Thank you, though, for emphasising the fact that my disease is curable. That's so encouraging. I wish everyone could have that kind of diagnosis.
Fondly, S.

 
Old 05-17-2007, 03:24 PM   #8
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hiya

My shoulder hurt too - but that could have been due to a whiplash injury earlier in the year - or it could have been my lump pressing on the nerve - I wouldn't read too much into it. The bone marrow biopsy is not because of any pain in your shoulder , it's routine.

The bone marrow biopsy, the way I see it, gives you a starting point. They need to see if it has spread to the bone marrow - if it has, don't worry, still completely cureable. It's all to do with production of white blood cells and neutrofil levels - strength of immune system - though don't worry about this as some people's immune system is naturally more robust that others. Even when going through chemo and supposidly having a weakened immune system, I was still the one on the office who was OK when everyone else was coming down with flu!!!

When you start chemo basically the drugs are gonna destroy the fast producing cells in your body - the aim is to destroy the fast producing cancerous cells. Other cells in your body multiply (produce) quickly - such as the cells that create your hair - hence some people will experience hair loss (I saved a fortune on bikini line waxes )- the chemo drugs do not select only bad cancer cells, they destroy everything that multiplies quickly. This includes the cells created by your bone marrow - the white / red blood cells - platlets etc that fight infection and carry oxygen around the body to feed your cells. If your bone marrow is not affected and still working effectively then you are starting from a slight stronger position. Basically this makes up the basis of the strength of your immune system

I'm not explaining it very well - tough day at work and it's 23:15. I hope you get the general idea

They are just trying to get the full picture so they can determine the right course of treatment for you.

don't worry about the bone marrow biopsy itself. I had heard horror stories before I went in and squeeeled like a 2 year old. Much to my embarassment I had to confess to the doc that it wasn't as bad as I had made it out to be!!

Hope this helps?

Ails xx

Last edited by Ails; 05-17-2007 at 03:39 PM.

 
Old 05-17-2007, 04:44 PM   #9
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hi there---that was very, very informative. "Knowledge" is "power."
You've helped immensely. Thank you for taking the time to answer me.
Your shoulders are probably "hurting" because you're "sprouting wings."
(...as in angels....) Seriously, people like you, that take the time to answer other people's concerns (whom you don't even know) have a special place in Heaven.
I'm still learning & these forums are worth their weight in gold. God bless.
Thanx a million....xoxo

 
Old 05-18-2007, 12:42 AM   #10
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hiya - anytime, I'll try my best to answer any questions - knowledge definitely IS power. When I went through it the more I knew the more I chilled out about the whole thing!! Ok, the treatment was a pain in the arse coz I could have been doing other things with that time, but even that really wasn't that bad

Take Care - you'll do great - right, must go to work!!

Ails xx

 
Old 05-18-2007, 09:46 AM   #11
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hi Ails..
I know our situations may be different (I don't know what your exact staging was, etc.) but, how long did your treatment last? I was told "ballpark-figure" to expect at least 6 wks./5 days a week/weekends off...and at "least" radiation---possible chemo, by my ENT. That's all pending, of course...I go through more tests next week. I guess everyone responds differently to treatment, so I'm bracing myself with lots of information, as to what to expect. This Forum is helping immensely, since many here have actually "experienced" it, whether it being themselves or helping a loved one. Like I mentioned earlier in my posting, my nervousness was mostly of the "unknown" and I had no idea what exactly was happening. I'm still somewhat clueless---but, what you explained in one of your posts was absolutely priceless to me. You explained it in a way no one has, so far, and doctors (God Bless them) always seem in a hurry, no matter what.
Anyway--back to my question: The treatment? How long? Painful? Hair loss? Any repurcussions? Your health now....how long has it been?
From all I can tell, you seem to be healthy, happy and wise. Sometimes these things in life really are "wake-up" calls, as we sometimes have a tendency to "slumber" through life. I will never look at a sunset the same again. What lessons we learn in life....if we're lucky. Thankyousomuch. xoxo

 
Old 05-18-2007, 11:54 AM   #12
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Helloo!

I was stage 2b - the 2 is on one side of the diaphragm (either north or south, so to speak) but in more than one place (for me the neck and the chest), the b is with symptoms

I had chemo but no radiotherapy. I had 6 cycles (12 treatments) of a regime called ABVD (the first letter of each drug used). I had treatment every other thursday. Basically the chemo worked on the cancerous cells but also knocked my white blood count out and reduced my immune system. I had to wait 2 weeks for the body to recover enough for another round!! Before each treatment my blood would be tested to make sure I was strong enough to go again, if not treatment was delayed for a week to give my body time to heal. Halfway through I had another CT scan to see how things were going - the tumours had shrunk to about half so I was pleased that I was right on track!!!

I did lose most of my hair but I always wanted a wig anyway and I got 5!!!!! Different colour for every work day!! Plus is was summer and I could go out with a skirt on without having to worry about shaving my legs!!!! See, in every situation there's something good!! One of the drugs did hurt a bit and I have pathically little veins so I needed to have a hickman line. But all in all it wasn't too bad. Even the antisickness drugs have come on leaps and bounds - so even that wasn't an issue. Don't get me wrong, there are other things I would have preferred to be doing with my time - errm like watching paint dry - but it wasn't too bad.

I know that docs seem busy but make sure you get all the info you need. Write down any questions so that you don't forget to ask them and if you don't understand something ask them to explain it again - and again, if necessary, until you understand. They will not be annoyed and will help you all they can.

My last treatment was october 2005 and I got the all clear in the november. I am healthy and happy - don't know about wise but it's kind of you to say!!!

Mark my words - soon you'll be having this conversation with someone that has just been diagnosed and you'll be telling them just what I'm telling you.

Take Care

Ails xx

 
Old 05-18-2007, 12:40 PM   #13
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Happy Friday!
Again, thanks for the info, I so need to hear.
After you write, I digest it some---and then read it again & again. I'm slowly understanding what I'm up against. I, too, have pathetically small veins. Nurses usually always comment about how small they are.
I feel like most of my problems lie in my throat area. Right now, as I type, I've had a longish-type gland fluctuate in size (right by the Adam's apple). Now, that I know I have these meanie cells trying to invade my nodes, I'm totally aware of the battle in me, that's probably been going on for some time. I've read the posts from way back (2005) and some believe that you could possibly be fighting lymphoma for 20 years, or more. I've known, especially the last 3 years, that something was not "right." Did you? Also, how often do you have to have "check-up's" to assure you're o.k.?
Again, I thank you so much for your information. My husband even told my Aunt & Uncle that I've found "reassurance" online that's been invaluable. He's aware that I needed a "buddy." We all do.
About the wigs---I'm an advocate, too, of changing one's look ....almost daily....
Hey, if Britney Spears can do it....why the heck can't we????
S. xoxo (hugs)

 
Old 05-18-2007, 12:47 PM   #14
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

Hi. Question I forgot to ask:
When the lymph nodes seem to hurt some, should you leave them alone?
I've heard of "lymph node" stimulation...but, that may be when there's no cancer. I also heard not to use a heating pad. Any thoughts on this?
thanx.

 
Old 05-18-2007, 01:35 PM   #15
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Re: Newly diagnosed "Hodgkin's"...next is PET scan/possible bone marrow test

LOL - what's good enough for Britney's good enough for us

It took me about 3 years to get diagnosed but once I was things moved pretty quickly. I don't know about heat pads but the lumps are generally painless - only hurt if you fiddle with them or if you drink alcohol apparently!!?? So stop playing with them, leave them alone!!!! You need to remember that this is quite a slow moving cancer so time's on your side. You're right about the time scale, with some lymphomas doctors operate a watch and wait policy with no treatment.

Like you, I knew that something wasn't right! That's why I kept going back to the doctor. Which is not like me as I am NEVER ill (strange claim to make considering I've had cancer - but apart from that little thing - I'm never ill ) When I was diagnosed it was actually a relief. For one thing I knew that I was not going insane and secondly I knew that I could start treatment and get better again!!

My first check up was 6 weeks, then it went to 3 months. I was supposed to be having 3 monthly checks up to approx the 2 year mark but they were so pleased with me that they put it down to 6 months pretty quickly. My consultant thinks that after this 6 monthly (which will take me up to the 2 year mark) he will put me down to 3 x yearly then discharge me from his service.

I am so glad that I can help you in a small way. The biggest help you are getting is actually from within. You come across as an upbeat, positive person which really will help. Me and the chemo nurse used to just sit and giggle whilst the treatment was going in which passed the time for me and seemed to cheer up the other patients

Ails xx

 
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