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after chemo what's next?

timlou
Posts: 60
Joined: Jul 2004

I know this is not new but hard to find info. My husband diagnosed in April 2004 with stage III colon cancer with 8 out of 20 nodes positive has been on Leuk/5 FU/Oxaliplatin with many starts and stops, surgery with re-section went well in May. Had one treatment then in July back in hospital for C-Diff infection and massive colitis. In August back in for blood infection klebsiella, got that cleared up and started chemo again, Oct. back in the hospital for Atrial Fib had to have his heart shocked back into sync. One more postponement of chemo last week due to low platelets, he goes back tomorrow to see if chemo #10 can be resumed. His biggest complaint seems to be the most common - neuropathy in the legs, hands and feet. My question- what happens next? How soon should we expect testing to begin to see how things went? We live in a small town but from what I read here we have a good oncologist with much knowledge of this disease. I just want to have a heads up to the protocol after chemo. Thanks for all your advice. You have truly been the find I have been looking for. Friends to talk to and understand. Louise

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Louise -

I can answer your question in three words:

Surveillance, surveillance, surveillance.

Regular colonoscopies (annually! and not a sigmoid scope!!), blood work-ups every three to six months, daily watching for symptoms. Some folks also have regular CT Scans and/or PET Scans.

The big idea is to monitor from now on and ensure that thedragon doesn't rear its ugly head again. If it does, catch it early and cut that head off.

Cheers

- SpongeBob

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Louise. One word that crops up is paranoia. It really doesn't have a place in survivors vocab. but many people(friends, rellies etc.) will probably say it occassionally when we all start thinking or worrying about things happenning to us re; our health. There is absolutely no substitute for being vigilant Louise. Watching Tim carefully for any obvious changes in health as well as being constantly aware of any problems, however small. I ended up having to have many heart tests as the chemo sometimes causes some heart problems. Fortunately all turned out ok and even tho I was a bit reluctant to tell my onc. about some symtoms(I thought I was being a little paranoid) he said all the tests really were necessary to make sure all was ok.
Post chemo can be a ***** as many side effects can remain for quite some time. Having said that many here do cope extremely well--others not so. I finished chemo in feb. 2004 and still have major sleeping problems and bouts of fatigue.
So you see, Spongers 3 words really say it all. Keep an eye out for ANYTHING unusual.
our best, kanga n Jen

timlou
Posts: 60
Joined: Jul 2004

Thanks SpongeBob,
His last chemo should be at the end of Jan. early Feb. We see the Gastroenterologist in 2 weeks and should be scheduling the colonoscopy at that visit. PET scans WILL follow or there will be hell to pay. I can be pretty persistent when I want something and I want to keep my husband with me for many, many years to come. Thanks for your advice. Louise

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Louise,

I was diagnosed also with Stage 3 colon cancer 2 years ago. Two months ago I discovered a recurrance. I was vigilent and persistent with my doctor. I asked for regular blood workups even when he said I needn't come back for 6 months, I always checked and rechecked my results and asked for regular scans. Thank goodness I did - I caught my recurrance early. Needless to say, I have changed doctors and am now going to the MD Cancer Center in Houston. They are very responsive there and do lots of follow up.

Good luck to you and your husband. I wish you lots of health and happiness in the new year.

Kerry

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Louise,
You and your husband are welcome as new patrons of "the waiting room". I finished my chemo in July of 04 for stage III also, with CT scan and bloodwork in Oct of 04 and colonoscopy in Nov of 04. No evidence of disease.
I am now scheduled for bloodwork every 3 months. My oncologist has encouraged me to come in or call if I have any concerns, letting me know that he and I both need to be vigilant for anything out of the ordinary. Hard not to be a little paranoid, but I'm glad to know he will investigate any of my concerns. I was lucky in that my course of chemo went very smoothly, with fatigue as my primary side effect, and a slight complication with a blood clot secondary to my port. The fatigue continued for some months, and it was not until I was tapered off one of my blood pressure meds that I became aware of how much fatigue that med was causing. I will be six months post chemo next week, and continuing to feel better still.
Good luck to you and hubbie; after all he's been through, he must really be looking forward to leaving this part of the journey behind him!
regards, Judy

taraHK
Posts: 1961
Joined: Aug 2003

Hi Louise,
I am glad your husband is nearing the end of the treatment. As others have said, then "the waiting game" begins, which is not easy -- but survivable.
As I approached the end of my treatment, my doctors (surgeon and oncologist) outlined what my protocol would be for follow-up. I'm sure this varies a little, but it might be useful to have your dr. outline (preferable write down!) what yours will be. For example, follow-ups with dr., blood test, colonoscopy, scans (CT/PET). I guess there is also individual variation. For example, because my CEA blood test was never elevated (even at diagnosis), I will be having a colonoscopy every year -- normally, after a clear one, it might be every 3 years or more. I will be having annual ultrasound of liver, because of the risk of recurrence to that site in rectal cancer, etc.
I believe the American Cancer Society (or some other group? I can't remember now) has recommended guidelines for follow-up. They are a little conservative for my tastes (my drs are doing more, and I am insisting on the max possible!) -- but a good starting place...
Best of luck. Your husband is lucky to have an assertive "advocate" as a partner!
Tara

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

It is really difficult to know just how many and what type of testing we should be doing. Often there are no symptoms, therefore Bob's advise is great..but what tests, and at what intervals? Tara's input is significant; if CEA wasn't elevated at original diagnosis, it may not be reliable as a marker. I am stage 4-was clean (CT,CEA) for 3 years, then mets to lungs. No primary - at least none that we know of..the PET
supposedly can't see under a certain size-(3mm?)the CT sees down to about 1mm. Elevated CEA was my Onc's red flag to do another CT, which found the mets. More chemo and rads-presently "stable disease"..now isn't that a term? Personally, I would like to see a standard, but everyone is different. Maybe someone can give a standard, but
it presently seems to lie somewhere between conventional and alternative medicine.. I'd love to see some definitive answers. I think you need a second and a third opinion. Bud

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Louise,

I'm happy your husband is almost finished with his treatments, but sorry he has so many roadblocks.

I'm glad you posted this question. I will have my six month follow-up on Wednesday and I am wondering if I should ask for a PET scan. I had a CT scan at my three month visit, but not sure what will be ordered at this one.

Keep us posted on your husband's progress.

Kay

timlou
Posts: 60
Joined: Jul 2004

Hi all,
Tim was able to have his chemo today that makes number 10 2 cycles to go. I asked the Dr. today to give him a prescription for a hot tub, he takes 3-5 baths a day to help with rectal pain and relieve the pain in his legs which we assume is a form of neuropathy and fatigue. We need the script to offset the sales tax not to buy the hot tub. When I asked the doctor to write the script she refused to say it was chemo related symptoms. Well if diahrrea and fatigue aren't chemo related I don't know what's causing it. I am going to his family physician tomorrow and have him write his diagnosis on a script. I believe this Dr. just doesn't want to say he is having side effects from the chemo she actually wanted him to see a neurologist first and have him decide what is causing the pain. I believe this Oncologist has Tim on the proper protocol for his colon cancer but I am sure looking at Moffit Research Center for all follow up work. It's a bit of a drive but it's my husbands life we're talking about. Thanks for letting me vent, it's been a long day. On a bright note I have a meeting tonight for the Relay For Life I participated last year for my daughter Jennepher who was diagnosed with breast cancer in Feb. 2004 and now will help with the local chapter. Thanks for being here. Louise

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