missed you all over christmas hols

finner
finner Member Posts: 230 Member
edited March 2014 in Colorectal Cancer #1
I wasn't at work,so did't get to this site until today. I really notice how busy this site is since I haven't had access to it since c20th Dec. Have used up a lot of empoyers time getting through it all.I hope to be online at home very shortly. At my hospital appt just before christmas, i received ct scan results, 3 weeks after scan. They had misplaced my previous scan results and it took that long to retrieve them, despite daily calls from me to both obncology dept and x-ray dept. You can imagine what an anxiouis time that was. Anyway, I had been off chmotherapy (folfiri)since about june, but was taking Avastin fortnightly to control an inoperable liver met. This appears to have stoped working because there is activity in liver and lung mets going on. The doc told me that they were going to stop
avastin and recommence irinotecan on its own. I questioned this and asked why they weren't giving me oxiplatalin, as a change. They said that as it was effective in shrinking the liver met before that was the way to go. Then later, it was decided that indeed my treatment should be oxiplatalin, leucovorin and 5fu push. When I asked head onc. why treatment changed again, he said he hadn't realised i had previously been on folfiri!?.Except for this website and wonderful people in it, I would not have had the knowledge to ask the question in first place. So far have had two sessions and things are ok, a bit of neuropathy, fatigue no nausea. My cea is up to 67, I think. Its hard to take in everything. At the moment have pain around original diagnosis site. Rang onc dept thos mornoing. Said I should go there for investigation. If I go I will be there until possible 8pm waiting to see dco, so I will wait and see how pain develops and try to hold out until nxt appt. Isn't it appalling that hte place is so underresourced that a person with a serious illness should have to queue for hours to get attention.
Thanks for listening.

Margo

Comments

  • optimist
    optimist Member Posts: 51
    #2
    I am sorry to hear about your recurrence. I am in a similar situation. After a liver resection 3/05, lymph nodes and liver lesions redeveloped while I was on Avastin/camptosar and later erbitux/camptosar. My CEA went up to 49 while I was on those drugs. Now, I have had one session of oxaliplatin and xeloda and I will be having my second this week. The side effects to this were tolerable. I am hoping to get a good response from these drugs. Good luck to you and keep in touch.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #3
    optimist said:

    I am sorry to hear about your recurrence. I am in a similar situation. After a liver resection 3/05, lymph nodes and liver lesions redeveloped while I was on Avastin/camptosar and later erbitux/camptosar. My CEA went up to 49 while I was on those drugs. Now, I have had one session of oxaliplatin and xeloda and I will be having my second this week. The side effects to this were tolerable. I am hoping to get a good response from these drugs. Good luck to you and keep in touch.

    Hi Margo, happy new year. Often we are reminded by various means that it can be dangerous to submit ourselves to information, especially medical via the internet and in part I agree, however there are many times that info from GP's, specialists and oncologists is not forthcoming and a lot of that due to the reasons you state here about available resources/time etc. In OZ it seems that we are slowly heading the same way. A typical appointment here is usually allowed 15 minutes unless the patient asks for a double appt. and only too often these appointments go far too quickly. It does not give us really good quality time to have our concerns met.
    As for info here on CSN I guess we must realise that info given is advice(with tongue in cheek so to speak) that must be taken in context and perused with an open mind and not necessarily used as a "must do". Every cancer situation is different and advice shared here in a lot of cases needs consultation with professionals...we must understand that...we are not medical practitioners. Having said that the support given here after well thought about can and is, sometimes extremely usefull.I have often sought advice here and used it to good advantage but am always aware that sometimes it is wise to refer that advice to my professional, my GP.The real problem is that some great stuff comes from our friends here and we don't have the medical systems that have the time to support those who have "been there, done that".
    Our very best for your future treatment.I hope that your pain is nothing serious.
    Ross and Jen
  • Kanort
    Kanort Member Posts: 1,272 Member
    #4
    Hi Margo,

    Having to wait for three weeks to learn of your scan results is nothing but ridiculous. I can't imagine the anxiety that you had to endure.

    I hope your treatments continue to go well and that this new regimen will work well for you.

    Sending you my best,

    Kay
  • CAMaura
    CAMaura Member Posts: 719 Member
    #5
    Margo - What a trooper you are. I agree that weeks for a reading is absurd....not to mention dealing with chemo. I sincerely hope that things improve for you. Are you thinking of any nutritinal therapy as well? The liver is so important and can be managed in a variety of ways. It might be worth a thought for you. Many have had great success in addition to chemo. It might be worht a look. All thebest thoughts coming you way. I hope to hear from you again very soon - Maura

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