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Thread: Stable, what does that mean??????

  1. #1
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    Stable, what does that mean??????

    I have had my latest scan and follow up Doctors appointment, which Meghan my wife came along to give support as she does everyday. In a nutshell, I came out of his office feeling like a just played in a sports game which ended up in a draw. The Doctor said there was minimal change in my results compared to the last scan, which is good that there has been no cancer growth, but on the other hand no reduction. The Doctor seemed happy with this result and expected it. When I probed deeper he said if my condition remained stable he would be happy until the current treatment stopped working and then we would have to look at changing again. Eventually the chemo will not be effective, so I hope we can beat it before getting to this stage. We asked the big question on life expectancy as you do! The answer. Same as I have been told before, 6 to 24 months from diagnosis. This is the standard spiel from every Doctor I have spoken to. Quote "research tells us this is the average time frame". Blah Blah!!! Looks like I will need to improve these statistics. As I write this blog I have just spent the last 8 hours in the ED at the Darwin Hospital. The tumor in my bowel bled today, which scared the hell out of me, but after multiple tests I got the all clear, but not really knowing why it happened. It could not have been due to a growth in the tumor as the scan showed no growth. We are hoping it was due to the tumor breaking down, but no proof of this. So just another trip to the Emergency Department, another day in my life now. Meghan and Sammy my 3 year old son came out to see me with Sam also accepting it is now a part of Daddy's life and takes it for granted. I hope one day this will be just a memory for him and we never see the inside of that dreaded Hospital. Back to have my 17th round of chemo tomorrow and continue the fight against the big C.
    Life goes on
    David

  2. #2
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    Hi David, I can't say I understand how you feel, because I don't. But my mum also has colorectal cancer and like you, doctors continually tell her that "its doing well" or "there's only minimal growth" witch is according them - great! According to us, not so great :frown: But I guess at the end of the day, they deal with the big c day in, day out, and figure that they could be seeing worse, so to them, the results are great. I constantly ask the awful question of "how long" and everything I hear and read is anywhere between 6mths to 5yrs - that's one hell of a gap! Although you don't want to think of it like this (especially with a 3yr old son) you need to live every day as though its your last. Soak up every single bit of happiness love and joy because there is a harsh reality. My mum (possibly quite a lot older than you as my son is 3!) started writing down the silly things that my kids say and do so that when she is having a bad day, she looks back through her little notebook and rather than be sad that she will one day miss out, she beams on what she has already had.
    They have stopped mums chemo and although it is slowly growing, they still haven't started it up again as they truly are very happy with the way its going.
    Hang in there, and spiritual/religious or not, pray that God allows you more time than any statistics show

  3. #3
    Super Moderator Top User sheila's Avatar
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    bethel park pa
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    Hi David-sorry your going through all this. stable-means exactly that-not any better not any worse holding its own.
    but as cancer is-that was actually good results(for now) depending on your doctor 3-6 mo you will more than likely have blood work and scans again. should the results stay the same nothing will be done-If they detect activity again a treatment plan will be put into effect again. Its good to think positive and be hopefull and sometimes people are fortunate that they are alloted more time. once diagnosed to stages 3 or 4 usually complete recovery would be a rarety.
    but you need to think-someone has to be those success stories and why cant it be you? why cant it be my mom?
    so far mom went from that 6mo-2yr prognosis, and she just went to the 6th year mark since this past.april.
    Oh shes still battling and dont know how much longer she wants to, but she could have been gone that many years already because initial diagnosis was stage 4 and that was 5yrs 3 mo ago rushed into the ER bleeding and almost didnt make it off the table. but she did! and shes here
    Mom is not one to lose or give up altho extremely difficult has very depressing times but manages to snap out of it better than the rest of the family- shes amazing

    Dont give up were all here if you need to vent alot of us here believe in prayer and I pray for anyone that seems to need it.-If you dont believe thats fine too take it as good thought intentions to you and yours . hang in here with the rest of us. keep us posted on how your doing.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    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.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    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.

  4. #4
    Super Moderator Top User Baz10's Avatar
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    UK
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    David,
    Agree with every word Sheila says, however to pick up on what she says about stage 3 or 4, so far I am one of the fortunate few as I was diagnosed stage 3 in March , radical surgery in early April and the histology results end April were so good (aparently) that they pronounced me and I quote my surgeon in the letter to me and my GP " Indeed this is good news as there is no evidence of cancer remaining" so no other treatment other than post surgical support is required with no chemotherapy necessary.
    As Sheila says become one of the low percentage survivors.
    I am not saying I won't have a return visit of the big C as no one can guarantee this.
    However what this evil disease has taught me is to live and cherish every single moment of the day, enjoy to the fullest my life with my good lady of 46 years and the love and total support of my grown and married child and grand kids.
    Even though our son is 3500 miles away in Dubai as he is Capt with Emirates airlines, he bids every month on his rosta for London flights and even though he has only 24 hours here he visits every single time and drives from the airports 2 hours to be he.
    Your wife and children are a blessing and will give you more and more willpower and mental strength to over ome whatever you need to do to beat this.
    My very best wishes and thoughts are with you and your family,
    Will it, keep faith with your doctors, fight it and overcome.
    Barry

  5. #5
    Regular User
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    Jan 2011
    Location
    Darwin
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    Thank you all for your support. I went for chemo today and the Oncology Doctor would not let me have the treatment. This is the first time I have not been able to be treated. This is an emotional step backwards for me as I feel it is the first sign of my acceptance that I am not going as well as think. I now have to have another colonoscapy before they will allow me to have chemo again if they find no issues. If there is a problem it may mean surgery to remove the tumor. The complication is my liver is riddled with cancer and to stop chemo may mean growth of the cancer which I have worked so hard to bring under control.
    I still have a positive frame of mind, but finding it hard to maintain. I will keep fighting on and realise it will only get harder from now on.
    Thank you all again

  6. #6
    Super Moderator Top User sheila's Avatar
    Join Date
    Jul 2008
    Location
    bethel park pa
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    hang in there David were behind you in your battle.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    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.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    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.

  7. #7
    Senior User swisecar's Avatar
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    Mar 2010
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    Knoxville, TN
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    David, I just received the same result, "stable," and while I would like to have reduction, I will settle for no growth. I mean, I'm living now with no real complications, so as long as things stay the way they are currently, then I should continue living with no complications. The two tumors I have are not interfering with anything that we can measure (such as kidney or liver function) so I can co-exist with them.

    What was the reason for not having treatment? Was this because of blood counts or because the oncologist doesn't think that the treatment is working? In the first case, you may only have to wait a week or so for your counts to improve to get your treatment, which is not such a big deal. Most of us have a delay in treatment or a reduction in dosage at one point or another. There have definately been times when I was truely torn about my treatments. On the one hand I wanted to have treatment because the chemo was fighting my cancer. On the other hand I was just sick and tired of being sick and tired and wouldn't mind some time off of treatment (or at least a delay). A small part of me would want my platelets to be too low. Then if they were I'd feel guilty for wishing they would be low and that I'd had wasted everyone's time. The whole experience can be a mind trip.
    May 1988 acute lymphoblastic leukemia (2 yrs chemo & radiation)
    Sept 2009 papillary thyroid cancer (thyroid removal & radioactive iodine)
    Sept 2009 colon cancer stage IIIC (removal of sigmoid colon & resection)
    Oct 2009-May 2010 FOLFOX6
    July 2010 stage IV colon cancer, irinotecan & avastin
    Dec 2010-July 2011 avastin maintenance
    Sept 2011 tumor removal involving small bowel resections
    Nov 2011-April 2012 resume irinotecan
    May 29 2012 begin radiation treatments 15 total
    current age: 28

  8. #8
    Super Moderator Top User Baz10's Avatar
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    UK
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    David,
    Possibly your Onco in suggesting a colonoscopy prior to further chemo is maybe a positive move even given your liver condition.
    I'm sure that they have considered your best interests and are taking the best route for you as they see it.
    Surgery, as my consultant surgeon said to me" the best route is to remove the primary cause of the problem, after that we can deal with the other problems If there are any". In my case there we no secondaries thank God.
    I am guessing that they consider a delay in further chemo will not unduly change the status of your liver condition and a colonoscopy may wel highlight that your tumor may indeed be breaking down, alternatively and sorry I talk frankly it may indicate something else.
    Let's hope and pray not.
    Maybe difficult to believe but I am sure that everyone on here is routing for you.
    I have never come across so many people that feel and care for the posters on this forum, it's a pity
    that society as a whole didnt have the same feeling and ethics as those on here, possibly as we have been are are going through the mill.
    I and Anne my wife wish you, Meghan and your son Sammy our best wishes, our thoughts and prayers are with you all
    Your posting tells us all you are a fighter and I am sure if there is a way to beat this you will find it.
    Best wishes
    Barry

  9. #9
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    Thank you swisecar,
    The doctor delayed the treatment as he wants to do a colonsocapy first to check the tumor. Bloodcounts have been steady with platlets being a little low but still within acceptable levels. I was told today my red bloods cells are enlarged due to the Chemo and waiting for my Oncology Doctor to give me his thoughts. I am currently on avistin and xeloda which is causing terrible skin itching and foot and hand syndrome, headaches and the usual triedness. I am still working fulltime but think it will be a matter of time until I need to cut back.

  10. #10
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    Thank you so much for your post. It is fantastic to know people genuinely care about others going through such a terrible time. the doctors are trying to get the liver tumors under control to the point they can then work on the bowel tumor.
    I just worry delaying chemo will not help me reduce the liver tumors sufficently to be able to remove the bowel tumor. Hopefully I am worrying about nothing and the tumor is breaking down. (fingers crossed). I am a fighter and with good reason, I want to see my little boy grow up to be a man and not be a picture on the mantel piece in his life. I will continue to fight everyday as I struggle to get out of bed and go to work. This keeps me sane and my mind occupied and am thankfull I can stil manage to do this. barry thank you once again for your thoughts and it gives me strength to keep going.
    i wish you and Anne all the best.

 
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