Diagnosed With Rectal cancer

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Comments

  • STS
    STS Member Posts: 16
    edited July 2016 #22
    JanJan63 said:

    I'm sorry STS but I disagree

    I'm sorry STS but I disagree with your doctors. Unless you don't have access to treatments such as various chemos, radiation, ablation, or several other ways of dealing with it, I don't see why they're telling you to get your affairs in order. Doing so is always a good thing because anyone can be gone at any time and thinking we'll live forever is just being blind. Aren't they offering you any options for treatment? I don't know what it's like in your country but I don't think you'd have been told there's no hope here in Canada. The lymph nodes being involved is scary but chemo should deal with widespread rogue cancer cells. Radiation can take care of the spots on your lung. Efforts should be made. What are your options?

    Jan

     

    I am starting my oral and IV

    I am starting my oral and IV chemo on Sunday. Oncologist has suggested i need to go 8 cycles of IV chemo every 3 weeks together wth oral chemo. After completion of chemo, i might go 25 cycles of radiation.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    STS said:

    I am starting my oral and IV

    I am starting my oral and IV chemo on Sunday. Oncologist has suggested i need to go 8 cycles of IV chemo every 3 weeks together wth oral chemo. After completion of chemo, i might go 25 cycles of radiation.

    Well, I wish you the best

    Well, I wish you the best with the treatments. We all have different things that our doctors try for various reasons. It's entirely possible that your body will react well to the treatments and they will change their prognosis. Or it won't worek well and they'll try something else that will make a huge positive difference. I hope you can prove the doctors wrong.

    I will always have hope no matter what they tell me. I had a severe medical situation a year and a half ago- blood clot to my lung which caused cardiac arrests, a stroke, kidney failure, etc.- and the doctors were asking my husband and daughter of they wanted to revive me because they felt I'd never be the same and would probably be in a nursing home forever totally dependant on caregivers. Instead I not only survived- the ICU doctors called it a mircale- but I'm exactly the same mentally and almost back to normal physically after spending 4 months in the hospital learning how to do everything because I came out of the coma paralyzed. So I do not accept it when doctors say there is no hope for someone. Our bodies can do miraculous things. Never, ever give up, that's all I know.

    So when the doctors say there's not much they can do, tell yourself you'll show them. You'll survive and they'll have to eat their words. God bless.

    Jan  

  • STS
    STS Member Posts: 16
    JanJan63 said:

    Well, I wish you the best

    Well, I wish you the best with the treatments. We all have different things that our doctors try for various reasons. It's entirely possible that your body will react well to the treatments and they will change their prognosis. Or it won't worek well and they'll try something else that will make a huge positive difference. I hope you can prove the doctors wrong.

    I will always have hope no matter what they tell me. I had a severe medical situation a year and a half ago- blood clot to my lung which caused cardiac arrests, a stroke, kidney failure, etc.- and the doctors were asking my husband and daughter of they wanted to revive me because they felt I'd never be the same and would probably be in a nursing home forever totally dependant on caregivers. Instead I not only survived- the ICU doctors called it a mircale- but I'm exactly the same mentally and almost back to normal physically after spending 4 months in the hospital learning how to do everything because I came out of the coma paralyzed. So I do not accept it when doctors say there is no hope for someone. Our bodies can do miraculous things. Never, ever give up, that's all I know.

    So when the doctors say there's not much they can do, tell yourself you'll show them. You'll survive and they'll have to eat their words. God bless.

    Jan  

    Thank You Very Much Jane

    Thank You Very Much Jane

  • lizard44
    lizard44 Member Posts: 409 Member
    Best of luck with your treatments, STS

    I'm  71, and was diagnosed with stage 4 rectal  cancer  with a 1.5cm metastatic tumor and some sub-centimeter  spots in the liver in May 2015. I haven't had any surgery yet, since the  rectal surgeon was concerned that the liver  tumor presented more of a problem than the rectal tumor. He felt  there was a good chance chemo and radiation could shrink the rectal tumor and if it didn't we could do surgery later, after the liver had been taken care of.  So I received  8 rounds of Folfox plus Avastin,  during which time the rectal tumor  began to slough off and shrink so that it no longer caused me   a  problem and the liver tumor shrank down to 1 cm. I then received 28 rounds of radiation with 5-FU, which  shrank  the rectal tumor so that it  was no longer visible on a scan, but the liver tumor grew to  3 x 2.4 cm. The oncologist switched me to 4 rounds of Bevacizumab, fluoracil, & levoleucovorin, but the liver tumor continued to  grow another 18%, so she switched me to Erbitux plus Irinotecan and I 've now had six treatments. My liver tumor, which is very close to the diaphragm, has now decreased in size  to 1.5 cm, plus there are two small lesions under 1 cm which may or may not be  tumors. I met with a liver surgeon   a couple of days ago and we are  going  ahead with an ablation on all three liver spots, but no date has been set yet. My port was not functioning  properly when I went for chemo this week, so  my oncologist decided to delay chemo  temporarily so  we could go ahead with the ablation in a few  weeks.   A decision has not yet been made on  the rectal tumor,  pending results of a PET scan I had earlier this week. The last two CT scans showed that the  rectal tumor  was not  visible, so I'm hoping the radiation and chemo zapped it for now.

    I'm not a long-term survivor, but I've survived just over a year with a really good quality of life, with few side effects and I'm very pleased with that.  My oncologist has been very staightforward in  stating that  she doesn't use the word "cure" when   talking about stage 4, but that with new treatments  the cancer can be managed much like other chronic disease, and different people react differently to the treatment.  Some don't respond well at all while others have  defied the odds and  survived for many years after a stage 4 diagnois. I don't know how much longer I'll be around, but   really none of us do anyway- we could get hit by a bus or something tomorrow, so I've decided to just get on with living  as best I can with the cancer rather than spending a lot of time worrying about dying from it. If your oncologist  gives off an aura of  doom or makes you feel depressed all the time, I would seriously  consider asking  for another  oncologist.

    As Laz noted, it's always a good idea to  have your affairs in order, and to prepare for the worst, but hope and work  towards the best. Ask a lot of questions,   learn all you can and  when you  have serious concerns about your proposed treatment, ask  for a second opinion.  I wish you the best of luck with your treatments and  hope  you are able to show your oncologist that he was  wrong and you  do have a chance for quite a few more years. 

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    I don't understand how

    I don't understand how telling someone they have "no chance" of beating a diagnosis, [when many are surviving worse diagnoses cancer-free for long periods or keeping it at bay], is doing any kind of service, especially in the beginning when everything is such a shock. I'd follow the program, and look to find an onc with a bit more heart to him. To me, it's a lousy, but understandable, question that's going to get a lousy, ballpark answer. Give yourself some time and treatment, then you'll come to know where your at............................Dave

  • lizard44
    lizard44 Member Posts: 409 Member
    Did anyone else get a private message from Ghest?

    I received the same message from Ghest as is posted here and just blocked this person or robot or whatever it/he/she is.

     

  • CSN_Lena
    CSN_Lena Member Posts: 28
    lizard44 said:

    Did anyone else get a private message from Ghest?

    I received the same message from Ghest as is posted here and just blocked this person or robot or whatever it/he/she is.

     

    Spammer

    Hi lizard,

    The message that you received from Ghest appears to be a scam. Please do not reply to the personal email address that they listed or share any personal information with them.  While we have taken measures to protect the site from scams and abuse, it still occurs occasionally.  Our apologies for the inconvenience

    Thanks for understanding,


    Lena
    CSN Support Team

  • ellend
    ellend Member Posts: 109 Member
    Wishing you the best

    I don't think there is a downside to waiting to get the iliostomy reversed, at least I hope not. I had some trouble with mine, but it seems to have settled down. I couldn't wait much longer to start chemo or it would lose its effectiveness apparently.

    I met a man while getting infused that said he was stage 4. I think he was 8 treatments in and said he has had a great response. His primary tumor has shrunk and at least some of his METs are gone. Chemo has been his only treatment so far. Not sure if he and the doctor have additional plans. He said his was found during his 10 yr colonoscopy, he didn't have other symptoms.

    There is always hope, I think it really hrlps that  you lived a healthy lifestyle before your diagnosis. I had changd my diet as soon as I found out to a mostly raw food diet, cutting out many processed foods. I had a good response to treatment. I also think finding ways to reduce stress and keeping a positive outlook helps.

    Best of luck,

    Ellen

  • ThomasH
    ThomasH Member Posts: 106 Member
    Sorry to see you here STS, but you have company.

    I'm a fellow recent diagnosed stage 4, also with an ileostomy. I received both in April. I have mets to my lymph nodes, and in my peritonial tissue, but all mine at this point are too small to detect on either PET or CT scans. The only reason I know they are there is that the surgeon who removed the tumor from my ileum and gave me my ileostomy found those while he was at it. Thanks goodness for that!

    My onc has never mentioned the word prognosis to me even once. He has said that they consider stage 4 palliative, not curative, however I'm scheduled for a HIPEK procedure in January once I'm done my 12 chemo treatments. The surgeon who will be doing the HIPEK says that they consider that treatment to be potentially curative. There are no guarantees here, but I choose take that as something positive and hopeful.

    I guess what I mean to leave you with on that count is that you really need to believe that there is hope for you. Having that positive outlook can definitely affect your outcome, and if nothing else, being hopeful feels a lot better than trying to live without hope. There are long term survivors on here, and any one of us could become a member of that group. It does happen.

    As to suppliments, I think everyone has their own journey on that score. For myself, what I take daily is 8grams of curcumin, 8 grams of ginger, 2000Mg B17 (yes I know that one has polar support in both directions, but I'm not having any negative side effects from it so why not), 800mg Cimetadine (supposed to help prevent metastasis after surgery, but if you are a pharmacist you probably already know that), digestive enzymes, Milk thistle, and a nice selection of good old vitamins including 10,000 IU of vitamin D and the full B complex.

    Every day I drink the juice from about 2.5 pounds of carrots, with assorted other veggies because there is a lot of good dense nutrition in there.

    Do I think that the suppliments are going to just fix me? No, I'm a realist. I have read enough studies on Pubmed (and you must be careful to weed out the good from the bad even there) to believe that there is some benefit, and that what I'm doing can support or enhance the chemo I'm taking. If I can make the chemo work even 10% better, why would I not want that 10%? As I said, it is a personal journey, and for every me doing the suppliments, there will be another person who doesn't believe in them at all, and that is OK. That is something you will have to make your own choices about, and I wish you success in whatever that choice is.

    I completely agree, get your affairs in order just because it is a good idea, and one less thing for you to stress over. Stressing out over the "What ifs" is really hard to avoid, but healing is so much easier if you can let that go and focus on what is actually within your control.

    Good luck to you STS.

    Thomas

  • rgamatko
    rgamatko Member Posts: 1
    My husband diagnosed with sigmoid colon cancer

    Hi STS, my husband was diagnosed with sigmoid colon cancer on 4/22/2016. It was a rather large tumor which they surgically removed on 5/16/2016. He also has an iliostomy bag. We have learned to deal with the bag but not without having had one or two disasters with it.  PET scan done a month after surgery revealed 2 lymph nodes were affected as well. He is now on IV chemo cocktail of anti nausea med, steriods, benydryl, Erbitux followed by Folfox. It is a 6 hour long chemo session with a 46 hour drip of Fluorouracil (Part of Folfox). The monday after the pump is disconnected he goes for a Neulasta injection, which helps increase white blood cell production. We go for the 6 hour chemo sessions every other week, up to 12 sessions. In regard to side effects, hes experienced a strong sensitivty to cold (can't drink cold beverages, or touch anything cold) and an acne like rash on his face and back.

    I am a little confused with you saying they are treating you with radiation as well. It was my understanding that colorectal cancer is generally not treated with radiation. Are they attempting to shrink your tumor with radiation prior to surgery? 

    Prior to his surgery, my husband lost over 50 lbs. I am happy to say he's gained about 20 back. His spirits are good, all things considered and we remain very positive. This is something that I  can not stress enough, keep focused, ask questions and remain positive. You must have the utmost faith in your doctors. We are pretty much at the beginning of our battle here as we just finished our 4th chemo session today. We don't know what the future holds but we know we will do whatever is necessary and never give up the fight.

    If I were you I most definitely would have had a second opinion. I would not take one doctors recommendation of getting "my affairs in order" especially since that was prior to any treatment. I wish you the best of luck and please feel free to reach out to me should you have any questions or need an ear.

    Warm regards,

    Robin

  • sashinka
    sashinka Member Posts: 13
    Colorectal cancer w/ liver metasteses

    Ihave a clear fluid with some blood after my fol fox rounds. Is this common?

  • sashinka
    sashinka Member Posts: 13
    edited August 2016 #33
    cbd - medical marijuana

    Any stories or experiences with medical marijuana?

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    sashinka said:

    cbd - medical marijuana

    Any stories or experiences with medical marijuana?

    New thread

    You need to open a new thread, as it is not appropriate to start a new subject in someone elses thread. 

    If you are having trouble opening this page  http://csn.cancer.org/forum/128  or opening a new thread, please email CSN and they will be happy to help you. 

  • STS
    STS Member Posts: 16
    circulating tumor cells

    Dear Friends, What is your opinion on CTC test methodolgy ? I was told it is more effecting in detecting cancer cells compare to PET? Have anybody in our group done the test?

  • rose70
    rose70 Member Posts: 1

    Hi everyone..just found this site although I live in Australia I cant seem to find anything here. I had cervical cancer 13 years ago ..treated with chemo and radiation and have just been diagnosed with rectal cancer. I am still in the staging process mri in 2 days...had colonoscopy...am feeling devastated and waiting for test and results is so stressful....just reading your stories is reassuring. Thanks..and will keep updating...Frown

  • danker
    danker Member Posts: 1,276 Member
    STS said:

    Thank You Danker. Did you go

    Thank You Danker. Did you go through Chemo and Radio ?

    chemo etc

    Look up my csn space and you w[ll see my complete history.

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    rose70 said:

    Hi everyone..just found this site although I live in Australia I cant seem to find anything here. I had cervical cancer 13 years ago ..treated with chemo and radiation and have just been diagnosed with rectal cancer. I am still in the staging process mri in 2 days...had colonoscopy...am feeling devastated and waiting for test and results is so stressful....just reading your stories is reassuring. Thanks..and will keep updating...Frown

    Hi Rose70, I'll bet it's

    Hi Rose70, I'll bet it's cooler Down Under than here in California, keep reading and updating your story, it's what we do here.................................Dave