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Strange moods

yesyes2
Posts: 592
Joined: Jul 2009

Hi Sue and Tom,

When I was doing my RCHOP I found each round different from the last but they all had one thing in common. Each one became more difficult with greater fatigue until I pretty much had zero energy for anything other than day to day serviving. With each additional chemo we get further andd further away from where we started as the drugs kill both good and bad cells. As someone said before, we start at 100%, 1st chemo we go to 80%, second 60% and so on. But at the end our bodies begin the rebuilding process and some of us make it back to 100%. For some we find a new normal. For me 8 months after completing chemo I still deal with being at 60% of where I started. And fatigue also affects our moods and how we feel about ourselves. Try to just remember to be kind to yourself as your body and mind is at war right now.
Sorry for such a long rambling post.
Love to you both,
Leslie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Leslie,
Thanks! This 3rd round changed for me and I guess I just wasn't prepared for it. I compare each round to the last one, which probably isn't a smart thing to do.My biggest hurdle has been getting through the pred week, and after round one and two, as soon as the pred was done I sprang right back to my old self...happy, energetic,etc. Not this time...2 days after the pred was done I started getting all sentimental and feeling like I was less than who I use to be. The fatigue threw me for a loop and when looking at my hubby it made me profoundly sad for him. Hadn't felt like that before, so I didn't know how to handle it. Thank God he is the man he is, because he didn't take offense or get his feeling hurt...just reassured me that we would get through this together..no matter what.I still haven't lost my hair, so I am preparing myself for that and have promised myself to remember that beauty comes from the inside...not the outside! So dang much baggage comes with having cancer...hell of a deal! Thanks for caring and sharing your thoughts...always so helpful! Love...Sue..(FNHL-2-3A-6/10)
Better get my butt off of here and clean up for my CT scan.

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Leslie, Sue,

Your comments really are a touch of reality. I think that I was like Sue, I have felt pretty good through my first few rounds, and then it hit harder. And then I let my own selfishness get control. But the fact that there are success stories helps to get my mind right. The upside is still there - we just have to keep our eye on the prize.

I guess it didn't help that I did some renewed research on my own diagnosis in order to know how to code it. It sort of brought up the fact that my pathology (for the lump that was removed from my neck in July) was 70% Aggressive Diffuse Large B-Cell AND 30% Follicular Lymphoma grade 3B - total of 100%. And, of course, the survival stats don't look as good for this.

BUT, we know that the chemo is working, so all I can do it go with the flow and try not to get so emotional as I did last night. We'll know when we know.

Again, thanks for you encouraging words.
Much love back at you.
Tom (DLBCL-4-7/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Tom,
Just try to remenber what you are reading is STATS,not people. We are all individual with diagnosis and treatments. Those stats are taken from all over the world and any other disease that may be present is not included. If a person dies from a heart attack,car accident, old age or whatever,all is noted is they had lymphoma when they died. An example is the well loved actor Tom Bosley just passed away with a heart attack. He also had lung cancer. The stats will show he was one of the ones that didn't make in the cancer group. Another stat is Gene Autry the cowboy star who died at age 99. It was noted he suffered with lymphoma and he became another stat. Hope that makes sense. John
FNHL-1-4A-(5/10)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Tom, I have a friend with this also and she did wonderfully after chemo and rads. She's a little over 3 years out, and I anticipate good things for you too.

I know the middle treatments were very hard for me too. What just dawned on me is the date on your signature. I got my initial diagnosis on 4/7/2006.

You are in my thoughts my friend and I am sending good vibes your way.

Beth
Stage 3 LPL/MALT/FL 4/7/2006

truckingalong
Posts: 444
Joined: Aug 2010

Leslie,

Yes, I have just been dealing with what you are saying. I just had 5th chemo out of 12. I have already started to work from home on Mondays, going out and doing more around house, cooking being in touch with people, etc. Whoa!! I need to hold the horse's reins!

I have this coming up: faster heart rate - 97 beats per min average. I have to catch my breaths when I walk outside some days. Anyone have this experience?? Well my onc ordered me to have EKG this Monday so I am taking it easy for now... wish I get my body strength going up - but am using my arms good by cooking and some washing! Sometimes, I cannot think because I am not sure what I should do next! Such indecisiveness because this body is changing so much.

Love
Liz

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Liz,
The only time I get the rapid heart beat and out of breath is the week I'm on the Pred. It's down right scary at times, and I have to be very careful not to go into complete panic mode when it happens, because doing that just makes the situation 3 times as bad. I will gasp for air and get very light headed and feel like I'm very close to passing out. Another thing that happens during the shortness of breath and rapid heartbeat episodes is I'll get this severe pounding in my head. It literally feels like the top of my head is going to explode, and I can hear my heart pounding in my ears. I have talked to my first doctor and also brought this up to my new doctor and both blew it off as just one of the side affects of the pred. They told me to avoid doing anything that brings on these attacks....well.."it happens even when I'm not doing anything strenuous" I told them, but all they responded with was for me to "just stay down for that 5 days". So...when you see me freakin about the pred, I'm truely feeling some really crappy stuff which is freightening as all get out. My heart test came back great by the way, and I've never in my life had any kind of breathing problems, so the "pred" is absolutely in my opinion...the culprit...not the chemo or rituxan. I just simply dred the pred weeks!!
Love...Sue..(FNHL-2-3A-6/10)

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hey, thanks Y'All!

Sue, sorry to hear about not getting results - but please keep us posted. I am very interested, as we all are.

Liz, TWELVE cycles of chemo!?!? I'm sorry, I don't recall the type of chemo that you are on. Is it a mild strength? 12? Makes my 6 look paltry. 12?

John, its always good to get the reminder about the stats. Yes, I agree. Each of us is who we are, not the stats. AND, based on the interim testing, I know that the chemo is working. So I'm not overly concerned. (Of course I'm not on the pred right now either.)

And everyone's comments about the preds -I agree! Now that they have pretty much washed out of me for this cycle, I'm feeling better. And, in fact, with all your encouraging comments, I think that I will put on a video upstairs and get on the rowing machine. Its been 3 days since I got any exercise and its about time that I got off my butt!
(Well, actually, with the rower I'm on my butt - but since the neuropathy has ruined my feet for the time being, the rower works better for me.)

Sometimes the hardest thing to do is just to get started.

Thanks again, People!
Tom (DLBCL-4-7/10)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I just did what I could and the further I got through my treatments the more naps I took. I would occasionally get short of breath and would catch myself taking very deep breaths and I do wish I would have done more excercising and think that would have helped. At least walking some would have been a good thing.

So use the rowing machine when you can, and during the pred week...stay close to the fridge LOL....I did. :) Seemed like I always had the energy for eating!

It's amazing what we can do to our bodies and how poison is actually helping in the long run.

My hats off to all of you chemo warriors! I keep you all in my thoughts and prayers!

Take care everyone Have a WONDERFUL weekend!
Beth

truckingalong
Posts: 444
Joined: Aug 2010

Tom,

I have hard time figuring out "rounds" so I count chemo each time I have it... I get chemo every other week - total of 12 ... that is 6 rounds, right? Having LD in math but like logic so think this way....

Thanks,
Liz

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Liz,

If you are getting chemo every other week for 12 weeks, that's 6 rounds. But if you are going for 24 weeks, that's 12 rounds. At least that's the way I figure it. But, no matter, 6 or 12 rounds, it's chemo. We still have to get from here to there.

Thanks for being here.
Tom (DLBCL-4-7/10)

truckingalong
Posts: 444
Joined: Aug 2010

Ok so that means so far I had 5 chemo tx which means I had 2 and half rounds - does that make sense? Next week will be my 6th so that is the 3rd round - right middle down the road ... 3 more rounds then hopefully I am home free.

Thanks,
Liz

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Sue,

Yes, that makes sense - that darn pred giving your system out of whack. You are really brave to go through this - I know this from having that experience once before. HUH!!! It is aggravating when we hear doctors "putting out the fires" by saying that we need to rest etc. etc. You described the symptoms well - head exploding etc. - yes! Likewise with the chemo situation for me - my chest feeling heavy, esp. headaches with ringing ears, on and on. That is why I am taking Topomax twice daily but hate having to do that - will see neurologist again next week to discuss this - Thank god for certain medicines that helps relieved some symptoms anyway but still it s really no fun!!

Hugs,
Liz

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Liz,
I have a call in to the clinic to see if I can cut the pred down to 30mg, or if they won't reduce the dosage, will they at least prescribe me something to level out the pred where it's not so extreme for the 5 days I have to take it. When I read that some people get their Chemo adjusted due to side affects, like Tom for instance getting the Vincristine eliminated due to neuropathy problems, and like Beth being able to ween down while on the pred, I can't help but wonder why the clinic, or my doctor won't work with me on the pred. I swear...that stuff makes me feel like I'm going to either have a massive heart attack, or I'm going to pass out from not being able to breathe. Anyways...the clinic never called me back today, so I'll just keep bugging them tomorrow. I only have 7 days until I have to take the pred again, and I'm already stressing about it. Hope they figure something out...if not, I guess I'll just have to grin and bear it...UGH!
Take Care Liz...we "will" get through this...somehow! Love Sue (FNHL-2-3A-6/10)

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