Mykids, my BP was always elevated while on chemo too, Note I was always low before this, and it has returned to normal since I stopped the chemo. I had to stop the Oxi after 8 treatments due to neuropathy, and just changed to just the 5FU alone for my last tretments. I feel very comfortable with my decision, my onc doctor wanted me to start on irinotecan with the 5FU , but I refused the irinotecan, side effects were too bad for only a 1% chance of no recurrence for me, plus I would have lst my hair for the last month, I said no way. I have had 2 clear scans so far since the end of my chemo, so I am 16 months since initial diagnosis, and besides the neuropathy in my feet I feel great.

Hi jlcolt! Neuropathy got worse during 8th treatment or before that? Did you have to go on Bp meds? Hope your neuropathy is going away and glad your scans are clear.

Are you sure it's the oxi causing the elevated BP?, it turns out that I am mildly allergic to 5FU causes me to come out in spots, slightly elevated temperature and elevated BP!

Hi m! I figured, if I'm having palpitations immediately after oxaliplatin, I assume it's from that. But you are right, it could be from 5fu. When Im given a week break, my Bp decreases by 10 points. The RNs keep saying its from stress, but I don't feel stressed like I did when I was working, even with my situation now. Cancer prognosis seem to change my outlook on life suation. Like my post, it's not a big deal, but waiting for scan results would be stressful.

Mykids my neuropathy was pretty mild but there, none the less at my 8th treatment we decided it was bad enough to stop the oxi. Unfortunately it isn't any better, I still have alot of numbness and pain in my feet, I have tried accupuncture it did not help and time sure hasn't helped either yet, I am thinking about starting on Cymbalta for it to see how that might work. And no I didnt take any BP meds, i'm not sure which drug did it but, the premeds that they give you the steriods, caused the palpatations for me they just gave me a does of IV Ativan while I was getting my chemo and it helped to take that away. Like i said though my BP is fine back to normal now, I feel great except my feet, but I just do my thing despite them, hopefully someday they will get better

Wish I had seen your post earlier! I'm one of the few people on here who has refused the oxi. My oncologist told me straight out that there is no conclusive evidence that taking the 5Fu/Oxi combo will make you live longer nor will it decrease chances of reoccurance. I noticed almost everyone on her has experienced some sort of neuropathy from the oxi so I said 'No thank you!'

I just finished 6 mos of treatment, taking only the 5FU. The response from the PA's and nurses was 'good for you for doing your research!' For years colorectal cancer has been treated with just the 5FU so I'm confident that I made the right decision! :-)

SuzyQsie63:
I too wish I had heard from you, way back when! Only after I stopped all Chemo did I find out that the 5FU was all they used to use and it was the 'work-horse' for the colon cancer. Then even after (I knew the Oxiplatin was killing me) I begged for only the 5FU but my Onc said NO this is protocol.

Then I found out the Oxi only boosts the chemo by about 3%.
You had/have a good Onc that uses sense and understands what Chemo (OXI) does to one.

The reason he kept pushing me to take the OXI is $$$$ and I will never believe anything else.

I wish he had only a sample of what some of us go through on the OXI.

Thank you for your input and so happy for you not suffering the effects of Oxi.

Thanks for the Information, even though late for some of us.

graci01

Met w/ onc again so he can sign orders and at the time I decided to continue with oxaliplatin and 5fu because of the stage 3 dx. And I was tolerating it ok. I had only one question for him. Was any of the chemo I am on a carcinogen? Basically, he states that the 5fu has been around for 40 years and not seem to be, but he couldn't say the same ("no definitive answer") for oxaliplatin, that's only been around for10 yrs. After a few days of thinking about his answer and your posts, I've decided to discontinue oxaliplatin. I've had 8 rounds and gave it more than half the chance. So, I feel confident about this now. Thanks again for your support. I am very grateful for you all and this site.:-)

I had OXY plus 5FU for 5 treatments and the neurpathy was starting to get bad enough that the Doc started cutting it down. I stopped after 7. I started taking Alpha Lapoic Acid.for neurapathy. 500 to 600 mg per day on advise of a friend that works for a pain management doctors office.. She said that is one of the first things they put people on to help with pain management. After after almost 2 years i still have a small amount of pain in my toes but the biggest part is gone and has been since about 1 -2 months after starting to take the Alpha Lapoic Acid. I don't take it much anymore. Sometimes I will buy a bottle and take if for a couple of months then skip a couple of months but I canno t say enough to applaud the use of it for managing the neuro
pathy.

ALL:
The reason I am not blaming the 5FU is because I had the 6 weeks of it plus radiation before my surgery.
Don't get me wrong, it was tuff! I blamed all my severe fatigue and yes Neuropathy on the 5FU. As for the fatigue, I found out the radiation causes that too.
I have heard 5FU does not cause neuropathy, but I have heard many many say that it does. It was rather different though, as it mostly caused cramps in my feet and legs and my poor hands were like claws. It was very painful and to this day I still have problems off and on. I have such problems opening things. (I have all the gadgets to help open things, but when I use them I get the deformed claws in my hands.

Never had anything like that ever happen until I started treatments, and I told my Onc and 'HE' told me it was a medical problem and see my GP! My GP said it sounded like a Chemo problem to him! He did give me some muscle relaxers that helped some. (He also wrote the hospital/clinic and told them he had been my GP for over 20 years and I had never had anything like that before) It sure caused a 'stir'. (at my Onc Clinic)

But I never had B/P problems or anything like that on the 5FU or Radiation. Of course the radiation keeps working in your body for over a year and does cause terrible problems to your bones and other problems. I do have pain in that area now and wonder what the future holds. (I have already had a pelvic fracture)

I just met one lady that says the Radiation had destroyed her hip and she has had surgery and replaced it.

http://csn.cancer.org/node/240798

However there has been an on-going study of changing the standard of 6 months to 3 months. (For the Oxi + 5FU) Back in the early 90,s the standard was 12 months and tests showed 6 months was just as effective, and now they are studying 3 months versus 6 months. (that would be a blessing for so many of us)

http://clinicaltrials.gov/ct2/show/NCT01308086

I don't know too many people that could finish all 12 treatments! I could not! We have a lady on here, that had severe Oxi reactions and her Onc suggested she stop @ 3. I believe all of her tests have been clear. (Correct? LadyArcher?)
I don't know anyone that wants the neuropathy and especially for life!

Any way we look at it Oxi is mean but other Chemos are too.
I don't think the trials will be finished until 2013?

This does make me wonder about the people that had the 12 month treatments, before it was changed to 6 months and now a chance for 3 months.?

I feel I have been lied to or deceived from the beginning of my cancer DX.
The Radiologist was concerned about my Bladder and I did everything she said, but she did not mention I would lose my vagina? I can not even call myself a female any longer.

If I had it all to do over and did all the research I have done, I would never have put any of Chemo Poisons in my body.

Blood&Roses: I agree with you! But I found all this out too late. My Onc did not even want me to drink Lipton tea?

There are supplements that do help, but here except in some large hospitals no supplements are ever used by Onc?

Knowing what I know now I would have (on my own) taken LGlutamine, Vitamin B,s Tried to get IV Vitamin C.
I would have especially taken the L Glutamine. Not only does it protect the extremity nerves but helps with all the colon and digestive system that the Chemo can be Hurting.

We wait until after treatments 'here' when these things can prevent or make the neuropathy so much less if taken with treatments.
I realize Onc say these supplements may effect the Chemo drugs?
Well they certainly are NOT the only Doctors in this world and when I hear of patients taking the supplements in other countries and not going through what some of us do, I really get into a Rant.

I have had cramps and muscle spasms since 09 and am darn tired of it! Still can't breathe and still have bouts with my heart.

Sorry for being so blunt, not usually me!
graci01

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

I know I do more research too. I understand they go by the standard protocal but it does not work for all patients.

I wish I could have just talked to my Onc! All questions had to go through the Techs?

Early on I researched so things and copied and pasted the info for him and it was not all that long.
I told the tech since I can never see him and ask questions what I had done. I left the paper on his office desk and told one of the techs' and she said "Grace he don't read things I put on his desk"

You are right they stick with the black and white and NO I don't think they research much of anything. (Some may) I did not have much of a ONC! The Mistakes he made with me were more than plenty. (He always had me mixed up with another woman?)

That is not at all comforting! I don't dislike Doctors at all.
I have worked with them and found most to care about what is happening to their patients.

Sorry I was so angry but I still can't say I had a decent Onc.
graci