chemo plan - bit overwhelmed

taraHK

Hi all,
(Brief background: just had solitary lung met surgically removed -- 2 yrs post tx for rectal cancer). Well, I have a plan now. Both my doctors (surgeon and oncologist) and I feel I should go for more chemo. Yesterday I met with the oncologist to discuss details. I will be having 6 mos of FOLFOX (oxaliplatin + 5FU + leucovorin). Every 2 weeks. I know in my heart and mind this is the right thing to do (for me). But, I'm feeling a bit daunted and overwhelmed at the moment. I'm sure I'll get my figher spirit back soon but in the meantime, words of support welcome!
One thing that is particularly overwhelming me is that the 5FU will be given by slow infusion -- and will entail me staying in hospital for 2-3 days each time. I know some people have the 5FU as a bolus, and some have Xeloda ("pill form of 5FU") instead. But, the slow infusion is my oncologist's preference -- and I like my oncologist....Luckily, the hospital is 5 minutes from my house....I need to keep focusing on the upside....
TaraHK

spongebob

Hey, Tara -

Thanks for the update. I am glad that you are taking an active role in your treatment. I can only imagine how daunting all of that must seem to be. Maybe you could discuss the pros/cons with other treatment options (Xeloda, bolus, etc.) with your onc and come to a consensus of what will be best for you?

Hang tuff, Tara - you're on the right path! Know that we're all behind you.

Be well

- SpongeBob

CAMaura

Hi Tara,

I'm sorry that you are needing to have the chemo at all, but it seems like a choice that you and your doctors are in agreemant about. I am on the regimen tha tyou will be receiving, except that I wear the two-day infusion within a small purse or fannypack attached with tubing to my port. In addition, I have one bolus pushed on day one (after the Oxy and Leucovorin).

I can certainly understand your concern and sense of being overwhelmed. Maybe your doc would really like to keep an eye on you in the hospital and be able to give you fluids or undertake the care from any side effects. And, it could be a good rest for you....having all your needs taken care for those two days! Plus, your doc will receive immediate feedback from the nurses.

Talk your concerns over with the doc and really try to get a feel for why he has chosen this method or regime. I'm so glad to hear that you like your docs....and I am sure that they have your best interest at heart.

Best wishes and stay in touch. Hang in there. I think it is much easier to plan for something than the actual undertaking. But you sound really centered and strong; I applaud your courage.

Cheers,
Maura

kangatoo

CAMaura said:

Hi Tara,

I'm sorry that you are needing to have the chemo at all, but it seems like a choice that you and your doctors are in agreemant about. I am on the regimen tha tyou will be receiving, except that I wear the two-day infusion within a small purse or fannypack attached with tubing to my port. In addition, I have one bolus pushed on day one (after the Oxy and Leucovorin).

I can certainly understand your concern and sense of being overwhelmed. Maybe your doc would really like to keep an eye on you in the hospital and be able to give you fluids or undertake the care from any side effects. And, it could be a good rest for you....having all your needs taken care for those two days! Plus, your doc will receive immediate feedback from the nurses.

Talk your concerns over with the doc and really try to get a feel for why he has chosen this method or regime. I'm so glad to hear that you like your docs....and I am sure that they have your best interest at heart.

Best wishes and stay in touch. Hang in there. I think it is much easier to plan for something than the actual undertaking. But you sound really centered and strong; I applaud your courage.

Cheers,
Maura

Hi Tara. Having a good relationship with your onc. is half the battle. Nothing worse than being left in the dark, so to speak. I would think that Maura's suggestion about "them keeping an eye on you" is pretty much on the mark. All of us are different and as reactions can also be different maybe it is in your best interests to do chemo the way they have set it out.
I often read here about those who got ports when I was doing chemo and often questioned why it was that I got "stuck" 5 days a week instead of a port. My clinic gals told me that my risk of nfection with a port was high, especially considering I had to travel 160 miles round trip each day. A lot of those miles I did riding my m/cycle in when I was able to. They just did not like the idea of me being so far from the clinic if infection did take hold. So I guess your onc. has his reasons too.
Hang in there babe, luv n huggs, kanga n Jen

kerry

Hi Tara,

So sorry you have to go through this. It is a bit overwhelming to have to go back on a chemo regimen. I was off chemo for 1 1/2 years and had my recurrance and had to go back on Oxaliplatin and Xeloda. I am still on chemo, Xeloda only plus Celebrex and will be for another year.

Hang in there, you know we'll all be here for you when you need us.

As Kanga and Maura said, liking your onc. is a big part of the battle. When you have confidence in your medical staff it helps give you confidence in your treatment regimen.

Take care.

Kerry

taunya

Jeez Tara,
I wish I lived close and I could stop by the hospital and visit! I am super glad to hear that it is close to home, that will make things much easier and is probably one of the reasons the Doc thought this would be doable. You sound brave and ready! How many days in between the hospital stays?
As someone else has said, if you love this Doc, stick with them, I think you really need that trust.
I am thinking of you and praying for all good results for you.
Hang Tough,
Taunya

Shandle

Hey Tera, Your being watched 24-7 while you are in there!.but... Geezz..2-3 days at a time would be a bit rough. My heart goes out to you. Have a bit of fun if you can! Use the time to catch up on reading or something. Most of all rest and heal! By the time 6 months has past...you'll be well again! Hang in there Tara. Our hearts are with you! ~ Huggggggggs Wanda

Glv49

I had the slow infusion of 5FU also, but I had a port. The continuous infusion of the 5FU I had for 6 wks and I never had one problem with it. I know everyone is different though. My onc told me that it is the easiest way for chemo, the slow infusion. After that I then went on 5FU, leukovorin, and oxilaplatin. All I can tell you is it worked for me I have been in remission since last March, from stage4 colon cancer. Talk to your onc maybe you can get a port. I never had any problems with mine, and I am having it removed next month. Good luck to you, and God Bless.
Glv49

Glv49

I forgot to tell you, that if your wondering about the continuous infusion, whenever I took it they put it in a little fanny pack bag. I wore it around my waist all day, at nite I laid it in the bed next to me. I was able to manuever very well with it attached to me. The tubing was long enough that I could get into the bath tub, and set the fanny pack outside on a stool. I was glad to get it disconnected every week when they changed the cartidge even if it was only for 10 min. But I got used to it, sometimes ya do what ya gotta do!! Best of luck to you.
Glv49

RunnerZ

Tara,
I know how you feel all too well. Six years ago I had stage 3 rectal cancer. I was treated preoperatively with chemoradiation. After surgery, the pathology report indicated that there were no cancerous cell to be found, that the treatment had wiped out the cancer even before my surgery. I was so disappointed when they told me I still needed 6 months of chemotherapy...I just wanted to hide in my house where I felt so good and not deal with it. But the oncologist let me have an extra week or two, then I dragged myself in for my firs treatment on my youngest son's first birthday. You just have to do this treatment...that's all there is to it. The Drs. want to make sure youa re cured...and this is their best medicine (drugs that were not even used for me 6 years ago). Grin and bear it...and kick and scream to us and in private as much as you want. You will get through it, and you will end up better for it. But, you have my best wishes on navigating this difficult time period.

jana11

I second the "get a port" idea. I did xeloda with oxaliplatin - my oncologist's preference. It wasn't so bad. I can give you some data on specific side effects later on; but in general I did great! Worked the whole time and just avoided cold things. Fortunately summer is here - no ice!!!!!!

Best of luck - stay tough. jana

livin

Hi Tara, I understand how you feel at present I am going through the 3 day treatment cycle at the hospital. HATE IT. I HATE being in the hospital 3 days, it comes so fast to go back, luckly I have 4 more treatments of Folfox can't wait. I guess just the idea of being confined 3 days gets to us. Hang in there it will be over before you know it. Livin

slammer

HI Tara, My name is Amy and I have stage IV colon cancer, and just completed 2nd round of chemo 12 months apart, I did good with it (of course yours is different) but I did Folfox regime same as you:Oxalilpatin,5Fu and leucovorin plus Avastin, Did it since Dec till now and one more (JUNE)
The thing is one oncologist wanted to put me in the hopsital for those 2 days for continuse IV drip of 5-FU, then I went to a Cancer Center in my town, and told them my dilemma, well we did the fanny-pack pump at home for those 46 hrs of 5-fu. Maybe that isn't an option for you but I said hell no I couldn't go to the hospital every 2 weeks for 6 months for this, I have small kids etc, But they do the home nurse who hooks you up to chemo pack in a fanny pack etc, and you are able to stay at home, shop just be around instead of the stay. check into that, but like I said to my Family "if I have to go to the hosp for this I will if it'll save my life but my DR. said they do alot of people this way, that is why I Have a PICC line in my arm, temporary IV line straight to the needed area.maybe it can be arranged, look into so you don't feel so overwhelmed. Some DRs like to moniter the chemo and your may just need that course. BUt Good thought are your way & live strong!
Love Amy

jsabol

Hi Tara, I have no advice, but just wanted to send words of support your way; hang in there. You've gotten lots of good suggestions with this post; it's great to hear about all the good things being done out there. Continued good luck to you, Judy

PhillieG

Hi Tara, I had a similar chemo, I had 6 months of FOLFOX (oxaliplatin + 5FU + leucovorin, plus Avastin). I did the 5-FU (gotta love the name) at home with a pump in the fanny pack. Maybe that is an option for you? I had good results with the chemo, just watch out for sensitivity to cold things and neuropathy.
Phil

taraHK

Thank you all so much for your replies. I really appreciate both the advice and the support. I am wrapping my head around it a bit better now, and 'girding my loins' to start next week......Thanks again!!