Bad day at the Onc. office

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Comments

  • sfmarie
    sfmarie Member Posts: 602
    ittapp said:

    Thank you all for lifting my
    Thank you all for lifting my spirits. I had to go and ask my Onc. the hard question I should have known what he would say. My husband was not with me today at my visit so I felt like now would be the time to ask. I always try to spare him from sadness because I need him to be strong too. He feels the sadness anyways. All of this is just so overwhelming to me and my whole family. I am a positive person most of the time but it sneaks in on me from time to time. I know hair isn't important but I know my kids are going to be so sad about it. I don't know for sure I will have to change treatments yet, I will know Friday after the results. Praying they are good and I can stay on Folfox..at least I know what to expect with this one. Craig, please don't worry about me or anyone else right now, you need to stay focused on yourself. I hesitated to post because I did not want to upset you. But of course you are on here to help as usual. I love you too Craig and all of you, God Bless you all, Patti

    Oh Patti
    Never give up HOPE. Noone can put a timeline on how long you will live. There are so many advances in treatments that noone can put a time line on you. You may not be a candidate now for resection, but with treatments, you can become a candidate down the road.
    I do hope your pain goes away soon, that you can enjoy your beautiful family and find some peace and happiness in your life. This is a beastly disease and it breaks my heart reading the posts of everyone. I'll keep you in my prayers! BTW-have you gotten more than one opinion? I have found that you need more than two to get the answers you really need.

    Marie
  • ittapp
    ittapp Member Posts: 383 Member
    AnneCan said:

    I am new to this board, but
    I am new to this board, but I read your post & felt I needed to respond. I too have colon cancer & have mets to my liver. I have personal experience with people who have had long survivorship with bad prognosises(sp?)& I wanted to share with you. One friend was diagnosed at 30 with ovarian cancer which had spread to her heart. She was given 3 months to live; 20 years later she was at our house for dinner a few weeks ago & has had no recurrences. Her advice has been to never look at statistics. Another woman I spoke to had stage IV colon cancer 15 years ago, with mets to her liver. She had colon surgery, was given chemo & radiation for her liver & was told that would give her an extra year of life. Here she is all these years later! She uses yoga & meditation & also said she believes in journalling before bed, recounting all poitives from the day. Another very inspiring story is that of the 86 year old woman who is in The Colon Club calendar this year. She has survived 60+ years after colon surgery at age 26. You can hear her story if you go to the Colon Club website. She said that she didn't know that she had colon cancer until years after she had her surgery (her doctor & husband told her it was gall bladder!) Her doctor had told her husband that she had 3 years to live after her surgery. She said that people who know they have cancer have to use optimism; in her case she was ignorant of the real story. I have read & heard of many other inspiring stories of survival, including many on this board. I want to hold all these stories in my head & heart. I don't think anyone can tell us how long we have to live; statistics don't take many factors into account such as age, general health, support system, etc. Keep believing & enjoying your family, friends and the beauty the world has to offer.

    Thank you so much Anne, I
    Thank you so much Anne, I needed to hear your words. I am usually a tough cookie but all of the sudden the pain in my back and liver has my head spinning. I had a PT/CT scan on the 18th of Sept. they said it was moving in the right direction and I was feeling good. Now I have back pain, liver tenderness and feel a little sick after I eat. I had one chemo treatment after my last scan and then gave me two weeks off for a getaway. I just don't want to think that it has gotten worse since then. What kind of chemo are you on? when was your dx? and how are you doing? sorry so many questions. I don't think I have seen you on here before, I am kind of new, was dx. in May and started on here I think in June. I have had a total of 8 treatments, I am on Folfox, I am not sure if it's the chemo that makes me feel bad all of the sudden. I will know something Fri. It is good to meet you and i hope to chat with you more.
    God Bless you, Patti
  • GOOFYLADIE
    GOOFYLADIE Member Posts: 232 Member
    Keep the FAITH
    Hi Patti,

    This is the third time I read your post and again the tears are rolling down my face as I remember the words rolling out of the doctors mouth and trying to make sense of it all.

    In that, let those tears of yours flow and wash the anger, fear and frustration from you. Let it renew you and give you strength to move forward in fighting this helacious disease. Let this board be your extra back bone of support and lean as hard and as often as you need to.

    May you get some rest and find some peace in all of this and gather your bag of courage together and we will all walk down the yellow brick road with you. My heart and arms are open to you. Make it a Great Day!!
    Goofyladie (Cass)
  • clier
    clier Member Posts: 29
    sorry
    Sorry you had such a crappy day, Patty. Who wouldn't be sobbing. Prayers & love going your way...
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    ittapp said:

    Thank you so much Anne, I
    Thank you so much Anne, I needed to hear your words. I am usually a tough cookie but all of the sudden the pain in my back and liver has my head spinning. I had a PT/CT scan on the 18th of Sept. they said it was moving in the right direction and I was feeling good. Now I have back pain, liver tenderness and feel a little sick after I eat. I had one chemo treatment after my last scan and then gave me two weeks off for a getaway. I just don't want to think that it has gotten worse since then. What kind of chemo are you on? when was your dx? and how are you doing? sorry so many questions. I don't think I have seen you on here before, I am kind of new, was dx. in May and started on here I think in June. I have had a total of 8 treatments, I am on Folfox, I am not sure if it's the chemo that makes me feel bad all of the sudden. I will know something Fri. It is good to meet you and i hope to chat with you more.
    God Bless you, Patti

    Patti, here is the "short"
    Patti, here is the "short" version of my story:

    I was diagnosed in late March 2009 with colon cancer when I was hospitalized for the second time in three months with an abcess on my colon. (I had welcomed in the new year in the hospital). At that time, they were not sure if I had a met on my liver or not. I was referred to a "super colon cancer surgeon" who specializes in later stage and metastasized colon cancer. Even though they still didn't know if I had cancer on my liver, one of my CRC tumours (I have 2) was fairly large & apparently in a difficult position. My surgeopn told me he could get all the cancer & I would be cured. My case went before a tumour board who determined the best treatment for me would be pre-surgery radiation + chemo (continuous 5-FU and oxyplatanin) (sp?) as well as post surgery chemo. Approximately 4-5 weeks later I had an MRI + CT scan. They showed that the CRC tumours had shrunken (about 30% ea) but I had 4 mets on my liver. The best course of action, they believe is to "attack" the liver mets, so I am now on Folfiri + Avastin (every 2 weeks). A home nurse comes to diconnect after 46 hr. I am still hoping to have the surgeries but time will tell. I know you are worried about hair loss - my oncologist said this is a possibility & encouraged me to get a wig. I talked to my sister-in-law who is an oncology nurse & she said she didn't expect that I would lose my hair. I found my hair is thinning, so I went & bought a nice wig to be prepared. It is similar to my hair colour but a little funkier style! So far I haven't needed it. I told my oldest daughter that if I am not using it when she is back from school @ Christmas she can borrow it to change up her look occaisonally! I have had 3 treatments of this cocktail so far + the third one was delayed because my nutrofils were too low. After a 1 1/2 week rest, my nutrofils were just fine, I would day "excellent", they went from .9 to 6 (the minimum they would let me have chemo @ is 1.5).so I was able to have the 3rd treatment last Friday. Thanks for asking how I am; I feel really good right now. My oncologist told me the effects of the chemo would "peak" about 3-4 days after I am disconnected & I have found the days I am most fatigued are usually days 1-2 after the disconnect. (Fatigue & the hair thinning seem to be my only side effects so far. I am trying to take it "one day" & one treatment at a time. If I feel overwhelmed, I try to tell myself I can handle what is in store that day. I am also trying to keep planning & doing beautiful things - that is what life is about!

    Take care & good luck tomorrow!
  • eric38
    eric38 Member Posts: 583
    clier said:

    sorry
    Sorry you had such a crappy day, Patty. Who wouldn't be sobbing. Prayers & love going your way...

    Patty
    I am so sorry.I know it`s discouraging, but last I checked none of us had an expiration date tattooed to us. Only God knows how long you have. When I had my surgery the surgeon told my family that the cancer was more extensive than he thought and I would have 6 months or at the most maybe 5 years to live but he doubted very seriously that I would last that long. I have responded well to treatment and now my oncologist believes that the outlook is very positive. Later, the surgeon apologized and told my family that only God knows how long someone has. So, take it from a cancer surgeon. Only God knows how long a person will live. Also, take it from me, circumstances can change. It is 6 months since my diagnosis and I am healthy as a horse and have been steadily improving.
    Eric
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Scan results???
    Hi Patti, If I read correctly, you would have had a scan two days ago. When will you get the results? I have prayed, prayed, prayed for you and some of the other members undergoing treatments and surgery yesterday and today.

    You have gotten some wonderful advice! We (as Christians) must ask God for healing and trust. Remember even believers said 'Increase my faith' and were not chided for admitting when they faltered or feared. I visualize touching the hem of a beloved garment for you.

    Much love and many prayers for you, my precious sister,
    Diane