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Onc changes gameplan unexpectedly... a good thing?

Anonymous user (not verified)

Yesterday I had R-CHOP chemo 6 of 8... my nerves had certainly got the best of me, and I nearly fainted in the lab.. you know, making a general fool of myself.

Well, I saw the oncologist, and he was acting funny.. just nothing felt right about our visit. He upped my chemo doses and sent me off to the infusion center. Next thing I know nurses are coming up to me saying "congratulations on your last chemo!"

It kind of blindsided me, as I thought I was supposed to have eight cycles. They asked the doc for me, and they told me he was going to stop and do a PET scan. If things were clear, no more chemo and if it's still active, moving to something different.

The oncologist never came back by to discuss this sudden change with me. Seeing the state I went in, perhaps he thought I couldn't take any more chemo? I'm not sure if he's being optimistic or just thinks he's killing me.

So, while I feel that I should be celebrating my last chemo.. here I am more confused than ever. I can't tell if my oncologist is giving up on me or what. I kinda feel like I'm being kicked out of treatment.. now I have three weeks to wait and find out anything. I kinda feel like I'm going to explode from all this pressure.. now add in the fact that I just took five prednisone pills. This sucks. I wish I had a positive message to share with you kind folks here, but I'm out for the time being!

Anyone ever have a similar experience?

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Welcome to the,"SIT AROUND WITH YOUR FINGER UP YOUR BUTT CLUB". This happens to so many people on here and everywhere else it seems. There is no reason for this kind of professionalism. I am sure the Dr. has not given up on you,but they really should be there to explain any and all changes and the reason why. It may be a good idea to get on the phone Monday to get some well deserved answers of what is actually going on. John

hiccup (not verified)

You made me laugh, thanks John. It was pretty weird from what I normally experience from my oncologist.. but then again, something was wrong with my nerves and I just can't tell what the truth was. I don't know how much Ativan they gave me before infusion, but I laid like a pretzel the most of the time in my recliner-- in and out of consciousness.

I know I would have remembered the doctor coming by though.

You're right-- I will be on the phone Monday morning to ask some questions... I'm just going to write this off as a bad experience I should try to forget about. Whew indeed..

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Nathan,

I agree with John. Call your oncologist or someone on the team to discuss.
Right now, try not to worry about it if you can - distract yourself and/or
celebrate! Your hair will start growing back and you will have to start buying
shaving and shampoo products again soon ;). I'm believing you will get
good scan results :) and 6-8 cycles is the normal dosage for RCHOP.

I suspect your oncologist had a good reason for this and you have to trust that
until you talk with him. You can come here and talk or vent all you want :).

Prednisone Anyone? ☺

John, I was wondering why all there were all those gloves in the treatment areas -
now I know ;). Maybe they should be called "waiters gloves" - LOL.

Hugs you guys,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Jim,
I loved that video. I am sure you are a member of the "Sit Around With Your Finger Up The butt Club" as well. I don't know of anybody that isn't. LOL. John

Folks24
Posts: 97
Joined: Feb 2007

I had my onocologist just tell me that 6 treatments was normal for R-Chop. Guess it depends on the dr., etc. I ended up hospitalized for 12 days on treatment 5. It just kinda blindsided me as on the previous ones I handled symptoms a lot better. On #3 I had the PET and CT and it showed the meds were working. My 6th treatment is next week - so I don't think the dr quit due to your reaction. My dr is changing the dosage somewhat on my 6th one so that may be a possibility.

I get the PET/CT about 1 month after treatment 6 and then a series of 4 shots in the spine. I am also hoping that the treatments got all the lymphoma out. Sorry your onocologist is not as direct and communicative as he/she should be.

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hey Folks,

Good luck on your last treatment and your following scan(s)!

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1046
Joined: May 2012

My doc and NP were always very methodical and detailed with every step of my treatment. I cannot recommend anything better than button-holing him and asking,straight up, for a detailed account. Call and demand that he call you back, if you donot have an appointment soon. I would do this Monday morning.

max

nikkig43
Posts: 73
Joined: Feb 2012

My husband's oncologist gave me his email address. At times during his treatment, I would get so worried about something that I couldn't sleep. I would send him a quick email and he was always very responsive. One night I had his reply after only 3 minutes! Maybe your doctor will offer his email address to you.
My husband had DLBCL stage 2. He was offered 6rounds of R-CHOP or 3 rounds plus radiation. He chose the latter. This type of cancer responds very well to R-CHOP. Because my husbands cancer was in his tonsil, the oncologist was able to actually see the site and thought he was probably already in remission after only one infusion! My point is, I think you should decide that this change in your treatment plan is good news. There is a very good chance that you're in remission and you are finished with treatment! Yippee! :)
Wishing you the best, Nikki

hiccup (not verified)

Hey Nikki,

I'm starting to feel a little less dirty from that chemo infusion, so I'm starting to see the bright side of this whole change in the game plan :) The thought of no more chemo is quite enticing!!

I was feeling very overwhelmed by it all, and I guess my confidence in my doc was shaken a bit. I just don't know if he completely understands how R-CHOP feels, but then again.. it's such a personal thing-- some people don't have any troubles. I just can't think of anything more disgusting.. I know these drugs are miracle workers, but I have felt some of the most unearthly feelings. It's almost like every cell in my body is begging me to pull out the chemo line and walk through a car wash a few times to get the ick out.

Now, for the time being, I should relax knowing it's my last treatment.. but then there's that looming PET scan. My cancer is on the top of my liver, pressing my lung. It still causes me referred pain in my shoulder. I don't think my doc believes that's there anymore-- heck, I don't even know.

This whole experience has been really tough on my mind. Everyone's optimism is appreciated, but it's blinding sometimes when faced with the reality that this might not all be over. It's like everyone around me is going "Yay! I know it's going to be gone!" while it's still causing me pain.

Whew. Anyways, now that that's off my shoulders.. I will say.. I am still working to keep my happy face. Not gonna let this silly cancer rule my life!

-Nathan

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Nathan,

Please don't feel you have to put on a "happy face" here. I know we can
be a little overwhelming with "positivity" and "cheerleading" sometimes.
I'm sorry you are still experiencing pain.

Cancer sucks big time. Thank you for sharing.

I hope you feel better soon.

Jim

illead's picture
illead
Posts: 503
Joined: Aug 2012

To go through chemo like you have and then get vibes (whether right or not) that there may be a problem must be horrible. I think sometimes doctors forget that emotions are so fragile for us because they try to be as emotionless as possible, add steroids to the picture and yeow! Jim's video said it all. Your doctor also needs to know what he put you through. Be respectful but firm. In the end you own your body and you have the right to know what is going on. Like the others say tho, Lymphona reacts so well to chemo, that hopefully it is only the doctor's insensitivity that has you in such a state. Try to relax and enjoy today. We are all thinking of you. Bill and Becky

hiccup (not verified)

Thanks for letting me vent! After some intensive reading therapy this afternoon, I'm feeling much better! Nothing like a little diversion tactic to make everything a little better!

I sure was in a state, and the cold demeanor of my doctor sure did make me feel worse. I can only imagine how hard it must be for him to make these kinds of decisions for people knowing their livelihood teeters in the balance. I guess I would be cold at times too. I think I'll give him a second chance.. but if the PET's dirty, I'm gonna seek a second opinion and try something different. No reason to stagnate here!

illead's picture
illead
Posts: 503
Joined: Aug 2012

Let us know how your day goes tomorrow if your up to it.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

We all know how you feel. We have all felt the same way and all have that doubt and scared feeling in the back of our minds. A few of us joke back and forth.It helps keep the optimism up. This is a terrible disease and no one knows when or if it will pop back up. Your feelings mirror a lot of what we all go thru. Please realize we may appear like ducks cool and calm floating on the pond,but believe me we are paddling like HELL underneath !!!!John

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