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Thread: Oncology visit, good news and not so good news and an apology

  1. #1
    Newbie Regular User Geri's Avatar
    Join Date
    Apr 2012

    Oncology visit, good news and not so good news and an apology

    I went to see my Oncologist yesterday. It was a different visit from the last time because this time she only talked about my case and my treatment plan.

    The good news is that the CT scan of chest, abdomin, pelvic was clear. They could find no cancer in that scan. The not so good news was my CEA count went from 166 before surgery to 5.9 after surgery but the last two weeks both tests were 6.9. It's suppose to be 5 or below. So according to this test, because it rose up again, there is more cancer somewhere but they don't know where.

    My treatment plan began with her explaining that I was a good candidate, because of my age, for HIPEC which is done in a different province. While explaining that it was new and hasn't had years and years and years of results to study behind it she received a call from the Doctor that does the HIPEC. His recommendation was that I go on Chemo now and get a PET scan after chemo. If the cancer hasn't occurred outside my abdomin then he will do the surgery. He will make an appointment to see me about half way through my chemo. I am not sold on this surgery just yet and really don't want to think about it too much. I just want to get through my Chemo and pray that the CEA counts go down to normal but I will keep the appointment with the HIPEC doctor and see what he has to say. That surgery scares me.

    So I go on Thursday to get a port put in. My Chemo is FOLFAX and it will start May 14th. I will be getting chemo every two weeks for 6 months.

    I am happy that finally we have a treatment plan for me. It's been 8 weeks since my surgery but I feel better now knowing where I'm going with this. I do have a question though...how long does it take on the day you go to the hospital to get chemo? Is it just something like 3 hours or does it take all day?

    I really have to apologize and thank all the people who answered my last two posts. I didn't get a chance to thank you on each post because I lost my password and wasn't able to sign in until today. I really think chemo brain will never hold a candle to my blonde moments! LOL


  2. #2
    Geri- sounds like as good as can be expected for the news.
    and hopefully since its lurking yet not sdetectable you have a good chance of finishing it off. so whats good about what the doctor said is that "in case" he does have a further plan for you-its when they dont have any more plans then its time to worry.
    The surgery may never happen. so for now take each thing as it comes concentrate on your treatment and getting through that. good luck and keep us posted.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    mar-11 return to original site-oxyplatin,5fu
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  3. #3
    Experienced User
    Join Date
    Jan 2012
    It takes about 3-4 hours and then you go home with a bottle for 48 hours, then back to the hospital to have it taken out. Doesn't hurt or anything like that just a bit time consuming. I start my second cycle on Thursday 10 May. Anna

  4. #4
    Newbie Regular User
    Join Date
    May 2012
    Hi Geri,

    Chemo can be up to 3hrs or longer ... make sure you take a Book.. or some Magazines... or you might have a nice snooze... we also had a tv in the cubicle ... My wife also had a port as her veins were so thin and well used ... the port was much much better..
    You might have to go home with more chemo for 48 hrs .. ..make sure you are very proactive and ask as many questions to the oncologists and nurses and do not be afraid to ask and then ask again if you are not sure ...

    Your Cea will go up and down.. so dont worry about that at this time, and it does not mean there is more cancer some were else ...

    Make sure You eat good and healthy ... and drink lots of water every day and excercie as much as you can .... and be positive in your out look and try and watch funny movies or tv and laugh a lot .. as it sets off endorphines that will make your immune system stronger and help you a lot ...make sure you Get Vit C and B vits every day in your body as body does not store them ...

    Hope this info helps... also know You are not alone on this Journey we are all with You... Best Wishes and May God Meet ALL Your Needs ....

  5. #5
    I am currently on Folfox 6 (just finished my 2nd treatment). My first infusion was a much longer day (@ 5 hours) but it was a little quicker the 2nd times. Best of luck and I think your reports sounds excellent. I am stage IV Colon Caner (b/c a spot on my liver.) My CEA is 6 and my oncologist is very happy with that number. I'm just trying to take it one day at a time and focus on the "good" part of the bad news.

  6. #6
    Experienced User
    Join Date
    Apr 2012
    My chemo is Gem?Cis and its A mix of 3-4 hours and then 2-3 hours. But I found the first one to seem like forever. I brought my iPad though, so that helped. I also brought some "sucky" candies. Like hard candy with lots of flavor. It seemed to help. Im one of these rare people that taste saline when they flush so I KNEW that I would taste the chemo someway. It helped a lot to have something in my mouth to combat it. (Just me though maybe) I brought my cell phone and taxed my friends, caught up with FB and even wrote out a much needed letter to my little on (For when she grows up, if she GOD FORBID ever has to go through this, I want her to have my experience for her and words to look back on)

  7. #7
    Good luck on your treatments! My only advice is to take the nausea medicine before the nausea actually starts. Hubby wanted to be tough guy, which he is, and did not take it soon enough and got so sick throwing up that I had to call the doc to get suppositories and give him. Learned a very hard lesson! Take care!

  8. #8
    Newbie Regular User
    Join Date
    Feb 2012
    @wytyspy I used to get preggie pops for my Mom. They helped a little with the nausea. When it got bad, then she would take the pills.


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