What happens after Chemo?

I am half way through 6 chemo treatments and I realize I don't know what to expect after the 6th is over. I've been so focused on the treatments I have not even thought to ask my Dr. So, I'll ask you all since I won't see my Dr for a few days. Mostly I am wondering what kind of follow up should I expect, monthly or every three months? Secondly, I have a port and I wonder how soon it would be removed after the last treatment.

Hope you are all well!
Kris

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Hi Kris,
Congratulations on ending treatment!

I ended treatment in December 2007 -- I had 18 sessions of Chemo. My follow-up includes appointments every 3mos to check my AFP (alphafetoprotein) levels. My cancer was Germ Cell, Yolk Sac and Embryonic so the traditional CA 125 marker is not an effective marker. I would imagine they will monitor your CA 125 levels.

I have had 1 CT Scan and think that I will probably have early CT Scans -- we have not really discussed that but it would be my preference!

The one thing that no one warned me of when I ended treatment is how that effects your emotions. That seems obvious but what I mean by that is don't be alarmed if you are scared/frightened to end treatment. I was! I actually tried to talk my Oncologist into another round -- my reasoning was that I did not know that the Cancer was there, how long it had been there etc. and I viewed Chemo as my "safety net" -- I was okay as long as I was in treatment but felt very vulnerable after it ended. Apparently that is very common but I had not been warned of it.

I only mention that to be helpful. There are so many emotions tied with Cancer and I think it is important to allow yourself to feel what you are feeling...if that makes sense!

Congratulations on ending treatment -- you have made it through an incredible battle!

Jill

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That is supposed to read "YEARLY" CT Scans...not early CT Scans.

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I usually have check ups every 3 months with blood work to check the ca-125. There have been times that after treatment I have had a ct scan to make sure all signs of cancer are gone. But most times (my Onc treats the disease,so if the ca-125 is normal he doesn't order a ct scan) Also I know how ugly those ports are but mine has stayed in for the past 3 years..and it's a good thing as I have had to use it for 3 recurrences. Those need to be flushed every month or 6 weeks to maintain their use. Good luck with your final chemos~~~Joanne

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Congratulations - you are half way there!

Your doctor will discuss the plan of action, but generally you will go back to see the doctor and get your blood work to monitor the CA-125 on a regular basis. The first time I had chemo and went into remission I remember my first post-chemo checkup was in a month, then 2 months, then 3 months, until we eventually built up to 6 months. I never went longer than that. If your numbers remain normal and you stay in remission, that's probably what you'll have. My onc. and I never felt comfortable going as long as a year once I reached the 5 yr. mark.

Good thing because I had a recurrence last year (after 6 years) with no symptoms and caught by my blood test. After that treatment ended, I had CT and PET scans. I had gotton up to 3 month checkups, but I now have a recurrence again and will be starting chemo next week.

Going for treatments and having your onc. and the nurses always around gives you a sense of security and you will feel adrift when they cut the tie of that security blanket. The day of the final treatment, you'll probably think "now what do I do?" What you do is go home and enjoy your life and pray you remain in remission. Be vigilant about your checkups and report anything that may not feel right to your oncologist. Having this cancer is a tough journey - you have to balance fear and anxiety with the best quality of life and happiness you can have. I wish all of that for you.

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Kris,
Congrats on your 1/2 way mark!!!! Yea! I am almost to that 1/2 way will be there next week. I am happy about the 1/2 way but still don't want to go and keep thinking crap I have 3 more cycles and 9 more chemo hits. I to have a port is yours in the abdomen area? What kind of treatment do you receive? I receive IP/IV taxol/cisplatin.

Glad to hear you are looking into the future! God Bless!
Stacy

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Good timing on this! I recently completed my 6 rounds of taxol/carboplatin - October 31st!!! I'm so excited it's over, but then again, I kinda feel like "boom" you're on your own again chicky! Yeah, I have CT scan scheduled and CA125 tests, but I can't help but feel abandonded now. I too used chemo as my safety net and now I don't know how to go back to "normal" living and not thinking about the darn carner that MIGHT come back. It's a weird feeling, and very unsettling.....

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Kris,
You were stage Ic, caught beneficially early. Me too. You will be fine. I am 3 1/2 months out of 6 rounds of chemo and feel super! Hair is growing back quickly. Yesterday's CA-125 was 12. Of course, we are cuddled by the doctors and nurses during chemo. I have not cut the strings yet. I go to the infusion center to cheer up the patients hanging on the drip. I take yoga for cancer patients/survivors at the Cancer Center. Life is good. You will be fine. I don't have any children either, but I am ok with it now.
All the best to you,
Gabriele

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Jill 13
Thank you so much for the info. I do have three treatments left, but for the first time am thinking in terms of the end. One feeling I have is exactly what you said, fear! I want to ask, Do I need more and how do you they know for sure one way of the other!

Thanks to all, Kris

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I finished chemo 2 years ago. I go every three months for a check up and CA125. My doctors feel that a CT scan is not needed unless the CA 125 goes up(which mine is doing slowly). I still have my port and do not want it removed. They flush it every 3 months and I take a baby aspirin every day. So far, so good. I began to feel better and better each day after chemo. The hair grew back slowly and darker than it was. For the first few months it was curly. I always had baby fine straight hair. After the first haircut, the curls are gone. I think good outlook on life is very important to feeling good. Slowly your strength will come back.

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Congratulations on being half-way through. I do want to let you know that for some weird reason, session four was more draining on me than any other session. A couple of other women have noted similar reactions on this site. I had to take an extra day off work, and had more pain, etc. Sessions five and six were back to my normal response to chemo.

Ditto on the sudden fear because we're not actively doing anything to fight cancer when chemo ends. I go back every 3 months for the first 2 years. Then I'll go every six months for 2 or 3 years, then annually.

Expect at least an annual CT scan. I had no CT scans, only the pelvic ultra-sound, before my cancer surgery, so my first post-chemo scan resulted in a partial thyroidectomy. Even though preliminary tests and a biopsy showed the large nodules on my thyroid were benign, we had no way of knowing whether the nodules had been there awhile or had grown suddenly, so I had to have the surgery. Thank goodness everything was all right, but I can tell you I certainly didn't want to have another operation seven weeks after finishing chemo!

I've had two other CT scans because I kept having a really painful spot under my left ribs. We never found a cause for it, even did gall bladder testing, but once I switched bra brands the pain went away! What a hoot!
Now I think, "This pain probably isn't cancer; I just need different underwear!"

I wasn't prepared for how long it took me to begin to feel "normal" after chemo. I was still dragging in April, but everything except the neuropathy and brain fog has returned to normal and they're getting better. Actually, brain fog IS normal for me since I've had fibromyalgia for years.

Unfortunately, other than my first chemo session, I was never cuddled by my chemo nurses. My office had more of a "Quit complaining. Keep a stiff upper lip attitude." My questions were usually met with a "You don't need to worry about that," instead of giving me answers. I dreaded the treatments, not because of the side effects, but because I was treated with so little compassion or dignity. I must not have been the only one with those issues because there are now signs all over the office reading,"You are the reason we're here. Let us know if you have questions or concerns. We want to give you a "5" on service." As far as I was concerned the chemo staff took what was a bad situation and made it much, much worse.

Thank goodness I had my between-sessions bloodwork done at our local hospital. The chemo nurses there were the ones who answered my questions, kept me from falling apart and gave me emotional support. I've thought about going there if I have to have additional chemo, but the department is in a gloomy room in the basement--no windows, very sparse, just depressing to walk into.

I hope I never have to make that choice!

Let us know any concerns you have, either during the rest of treatment or after treatment ends. You are going to be fine!

Blessings,
Verlinda

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Stacy,

My port is in my neck. I guess it's a good idea to keep it? I live in Costa Rica and am being treated in the states. I want to return to CR after my last treatment but I have no idea how long I can stay before they need to 1, remove the port or 2, flush it out.

Thanks so much for you advice!

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Kris,
I two was married to my high school sweet heart. Well was is the main word. lol He "forgot" we were married 5 times...lol Anyway why did they put a port in your neck? is this for treatment or for just getting blood? My port is for treatment, they put the chemo into my abdomen and I am on a bed and they move the bed into different positions every 15 minutes. this takes about 6 hours. I say I am a martini shaken not stired! lol. Hope you are feeling better about the end of your treatments. I know I can't wait until I am done. I just want to get on with my life and not have to have my life dictated to me by the chemo appointments and the sickness that follows! Keep the faith and God bless you and your family.

Stacy

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I think it is common ground to have blood tests and CT's or PET scans. See your oncologist every 3 or 6 months.

I felt like I was given another chance at life and decided to change many old habits. I had a very emotional time, didn't feel like my old self at all. I was looking in the face of death for so long, that when it was over, it was hard to stop thinking about the bad and focus on that moment and the future. I really wanted to be sure that I was as healthy as possible if anything were to recur and it did, but it was easier the second time around as I had really be taking care of myself.

So be sure not to just focus on when you have check ups, focus on everyday, what you can do to make sure you are healthy. Take the stress out of your life, eat well, exercise and enjoy every single day :)

Congratulations on your halfway point and good luck with the rest of your treatments!!

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