Back looking into the Abyss: The Leukemia & Lymphoma Society Community

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52 Replies Last post: Jan 6, 2010 5:42 PM by Tex 1 2 3 4 Previous Next

tonyg

99 posts since
Apr 5, 2009

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May 28, 2009 9:34 PM

Back looking into the Abyss

About 4 weeks back my mump reappeared. Just in time for my follow on check up after finishing RCVP. The Onc decided it was nothing much to worry over so I was put on WW and my next appointment made for 2 months time rather than the usual 3 months. In the 2 weeks since I last saw him the lump has grown from a pea size to golfball size. I phoned him up on Wednesday morning as I was a little bit concerned about this. He said get down there asap so I was there in under a hour being examined by him. The full prodding and poking exam. He could not find anything internally, thankfully. However, he has decided my lymphoma may have transformed so I will have another ct scan and a new biopsy.................Tony

pamd

1,347 posts since
Apr 3, 2009

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1. May 28, 2009 9:38 PM

in response to: tonyg

Re: Back looking into the Abyss

Tony, I pray it's nothing. Do lymphomas usually grow that fast? I have Leukemia, so I know nothing about this. But I hope and pray you aren't having a relapse. Try to stay strong and positive until you have something to worry about. I know that's hard, though. Keep us posted, I will check here for updates.----Pam

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tonyg

99 posts since
Apr 5, 2009

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2. May 28, 2009 9:59 PM

in response to: pamd

Re: Back looking into the Abyss

Pam

I'm not sure myself if they grow that fast. Thats why I though I'd better phone my doc up...............Tony

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bjm

54 posts since
Apr 4, 2009

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3. May 28, 2009 10:22 PM

in response to: tonyg

Re: Back looking into the Abyss

Oh Tony. Those damn abysses. Or damn golf balls. Take your pick.

I'll be thinking of you and hoping to hear uneventful news. Keep us posted.

Hugs,

Bonnie

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Sonydaisy

330 posts since
Apr 3, 2009

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4. May 28, 2009 10:23 PM

in response to: tonyg

Re: Back looking into the Abyss

Tony, smart move, better to know what is going on!! Lymphomas can be fast growing and quite agressive. Keep us posted.

Sonya

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sha_shelt

637 posts since
Apr 3, 2009

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5. May 28, 2009 10:53 PM

in response to: tonyg

Re: Back looking into the Abyss

Hang in there Tony! We're right here with you no matter what. If it is back, there are options - just have to find the right combo to blast the beast to smithereens. I totally understand the frustration and the waiting and wondering... it's never easy. Sending your thoughts and prayers from the west side of the pond.

Sharon

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Tex

3,909 posts since
Apr 3, 2009

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6. May 29, 2009 10:54 AM

in response to: sha_shelt

Re: Back looking into the Abyss

Well, I'm the eternal optimist on these types of things. I hope it's just a cyst (just a cyst?! the things we find acceptable).

But, "transformed" into what?

Hang in there, buddy.

Blessings

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tonyg

99 posts since
Apr 5, 2009

Currently Being Moderated

7. May 29, 2009 1:21 PM

in response to: Tex

Re: Back looking into the Abyss

Thanks to you all for your concern. I'm not sure what it can transform into. Maybe from indolent to aggressive? The onc never spelled it out. All he did say was they need a new biopsy to determine if it is still FNHL or changed into another form of lymphoma. If I remember correctly Sharon has said this has happened to her. Bloody tricky little monster isn't it? Although Follicular NHL is indolent the stage 3 ,my stage, should really be called indeterminate. Bugger. lol as my onc nurse said to me she knew I was Trouble the moment she clapped eyes on me. lol............Tony

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Tex

3,909 posts since
Apr 3, 2009

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8. May 30, 2009 11:02 AM

in response to: tonyg

Re: Back looking into the Abyss

Well, we could all see Trouble coming. Keep us updated on what you're finding out.

Be well.

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markf

108 posts since
Apr 3, 2009

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9. May 30, 2009 11:43 AM

in response to: tonyg

Re: Back looking into the Abyss

Tony,

Sorry to hear about your new concerns. When they say that an indolent lymphoma has transformed, I believe that it does mean to a more aggressive lymphoma. About 30% of follicular lymphomas eventually do transform to an aggressive form so it's not a rare event. Let's hope that it's not what it is.

Mark

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Sue

83 posts since
Apr 4, 2009

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10. May 30, 2009 11:48 AM

in response to: tonyg

Re: Back looking into the Abyss

I'm sorry to hear of you latest concerns...My son was aggressive lymphoma and I remember all the docs telling us that aggressive responds to treatment better than non aggressive. I know that aggressive lymphomas can grow rather quickly. I'm hoping that if it has transformed to aggressive than they will be able to treat it and it will respond well.

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Cookie Monster

517 posts since
Apr 9, 2008

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11. May 31, 2009 3:29 PM

in response to: tonyg

Re: Back looking into the Abyss

Hi Tony,

Well nuts! No one likes to here that kind of news from their doctor. I think it was definitely a smart move on your part to get back to the doctor when the "mump" began to grow so quickly. Yes, it could be a transformation, that was my diagnosis, transformed follicular, grade III, stage III and considered intermediate grade, thus the roman numeral "III".

Also, fast growing/aggressive lymphomas are easier to treat because they usually respond so well to treatments. However, we can hold out hope that just maybe it isn't cancer, maybe it is a swollen saliva gland or such. I don't know, I will hope and pray for the best for you.

When are you going for the scan? Please keep us updated. We're here for you.

Now, I believe it is time for some scones with coddled cream (is that right?).

Hugs and blessings,

Jane

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tonyg

99 posts since
Apr 5, 2009

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12. Jun 3, 2009 7:12 AM

in response to: Cookie Monster

Re: Back looking into the Abyss

I received a letter from my Onc on Monday with the referal to a surgeon for a biopsy. How things work here is first a referal, then an appointment date for a pre-op assessment, then the op. Hopefully all this will be within the next week. It was as quick as that for my last biopsy even with an ultra-sound exam thrown in as well. Once the biopsy is screened then my Onc will decide if I need a new CT scan. It is only 3 months since my last CT and another set of x-rays I had over the leg neuropathy issue 4 weeks prior to the CT, my Onc is not 100% sure about subjecting me to more x-rays. As with everything cancer wise this will be decided at my case review by the Oncology team. If I could only hope it was a saliva duct then I would be OK. No such luck though I'm sorry to say. My mump has now been joined by 4 little friends alongside it. LOL.

Clotted cream not coddled. It looks like cream cheese but without the tangy taste............Tony

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Tex

3,909 posts since
Apr 3, 2009

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13. Jun 3, 2009 11:45 AM

in response to: tonyg

Re: Back looking into the Abyss

You've tasted it?!

Keep us posted.

Blessings

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Tex

3,909 posts since
Apr 3, 2009

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14. Jun 16, 2009 3:21 PM

in response to: tonyg

Re: Back looking into the Abyss

Hey, Tony, what's up?

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May 28, 2009 9:34 PM

Back looking into the Abyss

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