Stopping Chemo after 10 treatments???

[sue]

justsing--can you tell us about the Phase I trial of Dendritic Cell vaccine? How is it made and administered? How often do you get it? How have you been on it? Do you get side effects etc...??? Sue

There was just a report at the ASCO conference this summer that intermittent Folfox may actually be BETTER than the full 12 doses. In intermittent you do 8 cycles with Oxi, 8 with just 5-fu and then another 8 with oxi. Doesn't sound like this is an option for you because the 5-FU is hard on your white counts as well. But you can only do what you can do. Your body is clearly telling you to stop!

You are a major trouper. I would have dumped the Oxi long before you did!

[sue]

you buy it. I bought the $400.00 one. Then your Dr. writes out a prescription for the 10's unit--for pain from neuropathy, be sure to wright 10's unit. Send in a copy of your bill and your prescription to (claims) your insurance company. Thats all I did and it covered it 100%. Keep a copy of both-bill and prescription for yourself too. My BC/BS covered it.
Sue

Sue, tell me more about insurance covering it????

[justsing]

I have been running a thread on it. Let me know if you have any further questions.

viewtopic.php?f=1&t=3695

viewtopic.php?f=1&t=3638

[sue]

How is this working for you??

trial of Dendritic Cell vaccine

I have been running a thread on it. Let me know if you have any further questions.

viewtopic.php?f=1&t=3695

viewtopic.php?f=1&t=3638

[justsing]

No side effects other than the incisions healing and TIME in the hospital. I felt a little fluish after the second round, kind of like after I get a flu shot. I won't know how it's working until I get rescanned in late Sept.

[sue]

how long in the hopsital and why? How many total teatments do you got?

[Jeff]

Sorry to take you back to Carol's original question but I asked my oncologist and basically his reply was that there is no magic to the number 12 for the cycles of Folfax except the fact that the studies all reference that number of doses. In other words there is a lot of literature to support prescribing 12 cycles and basically no literature to support another number. That doesn't say that a different number of cycles is bad or less effective, only that the doc is on firmer ground prescribing 12. I agree with Jaynee that your body is telling you to stop and it is the right thing to do.
Good luck
Jeff

[Carol54]

Jeff, Justsing, wwroam, Joanne, and everybody else....thank you for all your encouragement.  Makes me feel better about my oncologists decision to stop.My  onc did tell me a few rounds ago that all the other cancers get 8 treatments, and that's all he thinks we need.  But then he said..."Only a fool thinks he knows better then everybody else."  From that he said we would stick with the 12 txs, the "standard of care treatment."I have been taking Lyrica for 3 days now and only have occasional dizziness, so I'm good with that.Again, thank you and God Bless you all!

[CRguy]

Yes, there is NO magic number and we have chewed this over before. Depending on exact tumour factors and Docs experiences, AND recent studies, there will be a target they are shooting for, BUT....the patient is more important than the the tumour. Once they have achieved the level they want to, the rest is JIC...just in case. If you got TEN, way to go, if you go two more, great.

I have a saying in my practice, when it comes to things outside of the normal..."don't give patients what they NEED...give them what they can HANDLE !!!!!!!!!!" Then deal with the rest another day.

Best wishes
CRguy

[jentonn@verizon.net]

I wanted to answer the original question from Carol about those that did less than 12 treatments....

I am a Stage 3B survivor going into my 3rd year of remission. I did only 8 of the 12 recommended to me. I was a borderline colon/rectal cancer....my tumor was located right where the rectum ends and colon begins. I read that the standard treatment for rectal cancer was 8 treatments of FOLFOX, so that is what I did. But, I had also had chemoradiation prior to surgery and was downstaged after the pathology came back.

Hope this helps.

Jen

[Joy]

My stage IIi was in the sigmoid and was classified as Rectal. I had 2 rounds of FOLFOX, 28 continuous rounds of radiation with 5FU, 6 rounds of FOLFOX.
= Total of 8 Oxi

I'm happy that I didn't have to take 12 FOLFOX. My body could not have tolerated more Oxi.

2.1/2 years NED and still suffering neuropathy in my feet and hands.

[Joanne 814]

Thanks for the support. I am on cycle 12 and its a little rough at this point, but I can see the light at the end of the tunnel.
I get a white blood cell shot on my on weeks (Neulasta). My husband is able to give it to me to save me an extra trip to the office. So the whites and reds are in check. Mine is the platelets and the potassium.

I was told my my Onc that a lot of people are pulled at week 10 and cant take the neuropathy. So that is good! for me they said even if I have to skip a week, I will have 12 cycles. But my platelets jumped over the 100,000 this week, so I am cleared and hooked up. I am so happy.

So GREAT GOING to make 10. That is a huge achievement and we are all very proud for you to get that far!

ONWARD!

Joanne

[Mark25830]

Carol,

I think you're doing the right thing listening to your body the way you are. As one poster mentioned above and I asked my onc the same question, all the testing is based on 12 rounds and he couldn't say if less rounds is less effective or as good as the 12, there are no studies on it. An Onc I saw at Sloan for a 2nd opinion stated that most people do not complete the Oxi or get a reduction due to neuropathy. As you know, I'm almost through round 10 (get unhooked tomorrow) and still on 100% Oxi with minimal side effects, notice my feet much more. Everyone is different in how they respond! Hang in there and I hope you start feeling better soon!

[tommy_canuck]

I just came across this post..I've had 9 weeks of Folfox/cetuximab and 9 of cetuximab..every week..and I think my body has had enough..cold sensitivity now is an everyday side effect..nausea and vomiting every day despite great drugs like Emend, Zofran..stemetil and its derivatives make me too jumpy..I'm taking a lot of gravol as well..virtually all food takes like metal so I'm reduced to eating canned soup with a plastic spoon..surprisingly water is vile tasting..but I'm keeping Perrier workers employed. I'm meeting with my oncologist in a few days and I think I want at the very least a reduced dose..I was doing fine for the first 15 weeks of treatment but it seems to have caught up with me in the last few weeks...I have 3 folfox/cetuximab and 3 cetuximab treatments left..everyone keeps telling me its "only" 6 weeks but I've had it! I feel better knowing others have had this same dilema..Stage 3a diagnosed Feb 08...

[Gaelen]

tommy_canuck, I've been where you are. "only" six weeks, at that point (and sometimes you do mentally hit that point earlier...) can and does look like forever. However, lowering the dose can work--my results helped the oncologist create a new lowered dose protocol in HAI pump + systemic therapy. I got 16 FULFOX/Avastin treatments, mainly because dose levels were lowered and occasionally (3 times) my treatments were held a week due to my schedule.

Talk with your docs.