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

Up to Discussions in Coping with Treatment

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

Cookie Monster

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Apr 9, 2008

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30. Aug 12, 2009 2:25 PM

in response to: tonyg

Re: Back looking into the Abyss

Thanks Tony for filling us in on how you're doing. Sorry about the fatigue. It seems a lot of us have that after effect that just won't go away. I was trying to get some exercise, nothing major, just doing some walking down my street (well okay, so my street is at the top of a mountain which means it goes up and down a lot), but still, I wasn't running, just walking and my body rebelled. I haven't exercised in weeks now because it just makes me feel bad. Weird I know. But that's me. LOL

I'm glad to know your daughter is doing well and you got to see scan pictures of the little one.

Blessings and hugs,

Jane

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porciniak

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31. Aug 17, 2009 12:36 PM

in response to: tonyg

Re: Back looking into the Abyss

Hi Tony,

It's been a long time and I've been wondering where you were hanging out!! I've been somewhat 'out of it' with the sct and board viewing is a hit and miss kinda thing.

So happy to hear you've a grandchild to look forward to, plus the time to recover some energy before you become taxed with keeping up with a toddler

Wonderful news about the w&w. Hope your place is winterized as you'll have no help from Mr. Pred to get it all done. Cheers, dj

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tonyg

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32. Sep 7, 2009 2:10 PM

in response to: tonyg

Re: Back looking into the Abyss

Hi Another Update

I had my 2 month medical again last week. Good news and bad all in one go .Scans confirm I'm showing little signs of activity except for the pesky mump . So much so I've been now downgraded to grade one FNHL. A mixed bag really because that means I am now a candidate for Radio Therapy. Waiting to see the specialist for an assessment to see if he can zapp the beast on my jaw. At least it's not going back onto chemo again. Hey ho, another adventure beckons. Any tips from former radiation treatment folks about what I can expect with regards to side effects etc. most welcome guys?........... Tony

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Tex

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33. Sep 9, 2009 5:22 PM

in response to: tonyg

Re: Back looking into the Abyss

Being an AML'er, I'm not sure where the bad news was. It all sounds pretty good to me...I mean, I'd rather not get zapped but the downgrade seems to be what you've been looking for. Hooray!

Blessings

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Cookie Monster

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34. Sep 11, 2009 10:06 AM

in response to: tonyg

Re: Back looking into the Abyss

Hiya Tony,

Hmm, yes a mixed bag for sure. Sorry that I can't lend a hand in the radiation department. When I relapsed with grade I fNHL, my ENT removed the entire node for biopsy with permission from my oncologist. The good news about that is I didn't have to have any other treatment because that was the only "hot spot".

Wishing you a boring new adventure.

Blessings,

Jane

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Cookie Monster

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35. Sep 26, 2009 10:32 PM

in response to: tonyg

Re: Back looking into the Abyss

Hi Tony,

Any news on the radio therapy front? Just wondering how you're doing over the pond. Is it time for me to make more scones?

Blessings,

Jane

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tonyg

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36. Oct 1, 2009 6:12 PM

in response to: Cookie Monster

Re: Back looking into the Abyss

Hi Jane

I saw the new set of doctors at the new hospital where my radio therapy is to take place earlier this week. More prodding and poking etc. I'm booked in for another scan and a facial mould for a protective mask next tuesday and wednesday. I've had the pros and cons fully explained to me as well. Once all the pre treatment phaffing about is over I am to have 12 zapps of radio treatment. The dates of these have still to be arranged. The docs have said it wont be too long a wait though ...............Tony

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Tex

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37. Oct 2, 2009 11:53 AM

in response to: tonyg

Re: Back looking into the Abyss

Hey, Tony.

I keep looking for updates and was glad to see one. I also notice you're not posting on the Open Forum as ,usch as you used to. Hope it's because you've found something else to interest you. But have to say I've really hoped it's not because you're feeling crappy.

All to say, how you doin'?

Blessings

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tonyg

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38. Oct 2, 2009 6:44 PM

in response to: Tex

Re: Back looking into the Abyss

Hi Tex

Thanks for the concern about my welfare. It's most appreciated by me I can tell you. I'm not feeling crappier as such with my illness, I have just been a little down in my mood about the whole thing at the moment and thought a break away from the boards for a while might be of some benefit in getting me back on track. I've not defected to some other place, most days I will check in and read the posts. You are all im my thoughts everyone of you and I share in all your happy moments and the tragedies as well. I have not left here and as soon as I get myself back on track and feel able to give a more positive contribution to the boards then I certainly will. All the best to my fellow warriors.............Tony

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sha_shelt

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39. Oct 3, 2009 12:57 AM

in response to: tonyg

Re: Back looking into the Abyss

Hi Tony!

On to another path in the journey, eh? Here's to knocking those mumps into nothingness quickly and completely!

Understand all about needing to get one's head together. I was in kind of a dark place myself awhile back. Felt fine physically and it was all between my ears wondering why treatment after treatment has failed and if I had it in me to go yet another round in the ring. Guess my story could even beat Rocky Balboa (ever seen any of the Rocky movies?). Maybe call this "Sharon 7". LOL Rocky has only had 6!!! LOL

We just have to pull ourselves up and keep slogging forward until we find "the" answer for us individually. Hoping to get accepted into the trial for the experimental drug - have a good feeling in my gut about it.

Rads aren't a horrible thing - once you get everything set it's basically zip-zap-done each session. The "tan lines" aren't necessarily the kind you might want but will fade.

Keep us posted. Thinking of you......

The desert dweller .... LOL (Although the weather is moderating - autumn is almost here!)

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Tex

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40. Oct 3, 2009 12:25 PM

in response to: tonyg

Re: Back looking into the Abyss

tonyg wrote:

Thanks for the concern about my welfare. It's most appreciated by me

Hey, we're buds. Of course I'm concerned. I'm glad you're not physically worse for wear. Hope you can get your head turned around. If we can help in any way, let us know.

You know, you've been looking into the abyss for quite some time without falling in. That's got to count for something.

Blessings

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tonyg

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41. Nov 4, 2009 4:28 PM

in response to: Tex

Re: Back looking into the Abyss

hi guys

I guess I've been awol.

Well here is a long awaited update--------------3 weeks back I had my final scan to line up the Xray blaster. Net result --------------- Treatment cancelled and now after a whirlwind 3 weeks I'm now on R-CHOP. The scans found more sites than first expected so it has been decided to re write the plan for now and blast any residuals later if needed. I guess I kinda knew all was not rosey in the garden as I have been feeling pretty much the same as when I was first diagnosed. Oh Hum is the polite way of saying it but you guys know enough expletetives already lol. I said em all just recently.....I sailed through R-CVP with very few side effects but with this R-CHOP I am deffinately feeling under the cosh. Feeling lousy is an understatement. Still on the path though and that's the main thing even if it does sometimes seems it's a case of two steps forwards and one step back with this little beast. I'll try to update as much as possible if possible. Ciao for now to all my fellow warriors and keep up the good work and fighting the good fight..............Tony

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Tex

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42. Nov 5, 2009 12:38 PM

in response to: tonyg

Re: Back looking into the Abyss

Just remember, two steps forward and one back is still a net gain of one step.

I'm sorry things got changed on you but radiation is something I managed to avoid and never felt the least bit of regret about it. I'm all for keeig it to a minimum.

Hope you get on top of this and start feeling better ASAP. Do try to keep us updated. We miss your wit around here.

Blessings

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Cookie Monster

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43. Nov 6, 2009 12:01 AM

in response to: tonyg

Re: Back looking into the Abyss

Hi Tony,

Wow, what a blow to the psyche, thinking you're going to have radiation and then the big guns get pulled out on you. I'm so sorry to hear you're on this path. However, I will hope and pray that this set of treatments does the job and gives you a long remission.

Hugs and blessings,

Jane

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Cookie Monster

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44. Nov 21, 2009 12:06 PM

in response to: tonyg

Re: Back looking into the Abyss

Hi Tony,

I've been wondering how you're doing with your treatment. Please update us when you can. I'm hoping the side effects are managable for you.

Blessings,

Jane

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