Stage IV Metastatic Colon Cancer

VMoles
VMoles Member Posts: 3
edited March 2014 in Colorectal Cancer #1
A little about me. I was diagnosed on 4/27/2005 with colon cancer. Had surgery to remove tumor, did radiation and chemo. Had a temp. ileostomy which I had reversed a year later. When I went back for my 6 month check my CEA level had risen so we did a CAT and a PET. Cancer had moved to my lungs. I had 3 sm. tumors. Had the tumor in left lung removed and began chemo again Folfuri with Avastin. Had a colon fistula in 12/07 that could not be repaired because of the radiation damage, so I now have a perm. colostomy which is ok. I have been doing chemo on and off for 3 years. My last CAT Scan in Jan. showed a new very small tumor on my Adrenal Gland. My CEA has risen now to 224. It never went over 24 at it's highest. I had a new CAT scan done and the lung tumors are still small and not growing but the adrenal tumor grew a little bit. My doc says that the chemo is no longer working and all we have left here is Erbitux which I am suppose to start next Wed. 5/7. Can anyone out there share their experience with me on a high CEA, adrenal tumors and the Eribtux. I'm a little frightened of it. It sounds like the first treatment can be bad.

Comments

  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #2
    I can't help too much with the CEA and the adrenal gland question, but I know something about Erbitux. I have been on Erbitux for almost a year. The only real bad side effect is a rash that can be a bit of a pain but definitely controllable. You just need to ensure to moisturize a lot because your skin does dry up and flake and keep hydrated. I take monocycline, an acne medication, that helps and I use Cetaphil to wash and moisturize my face. I know people who were on Erbitux for a couple of years without any problems. Good luck. Monica
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #3
    I can't help with the Erbitux since I have not been on it... but it looks like Monica has given you good info about it.

    BUT, I sure understand and empathize about the spread to the lung and adrenal gland. The CEA can sure be different for different people.

    I was diagnosed with Stage III colon cancer in Dec/06, had surgery to remove the tumour and a resection to the intestine/colon. Once I was healed from the surgery, I did 8 months of chemo and 6 weeks of daily radiation. I finished my chemo at the end of Oct/07. At that time, my CEA was 2.7 In Dec/07 I had a CAT scan (came back clear) and my CEA was 6.0 My onc said that we wouldn't worry about it, it could be just one of those flukey things. I went to Hawaii in January and although I enjoyed myself, I just felt "off"... nothing I could really pinpoint. When I got back at the end of Jan, my CEA was 18.0, three times what it was in Dec. So my onc ordered a PET/CT scan.

    The scan showed a small 1/2" tumour in my right lung and my right adrenal gland lit up. Now here's where it gets a little complicated. I have a growth/tumour on my right adrenal gland but it has been there for over 7 years. The first CAT scan I have ever had in my life was in 2001 after a hysterectomy. The growth showed up then. It has been benign all these years so it came as a complete surprise that it lit up on the PET scan. My onc then ordered a bunch of blood/urine tests to see if it would be safe to do a fine needle biopsy... which it was, so I had that done about 3 weeks ago. The results from the biopsy showed that the cells from the tumour tested positive, but they don't know yet if the cancer in this tumour is a spread of colon cancer, or a spread of lung cancer (we don't know yet if the lung lesion is a primary cancer or a spread of the colon cancer) or if it is a primary cancer itself.

    So, we have a plan. I met with the surgeon this morning who is going to do surgery to remove my right adrenal gland and the tumour. He is going to try and do it laparoscopically (sp?) which is a less invasive surgery and the recovery will be quicker. We tentatively are planning to do this at the end of May/beginning of June. Once I have recovered from this surgery, a different surgeon will then do the lung surgery and remove the small 1/2" lesion. The rest of me seems to be fine with no sign of disease (knock on wood).

    So, I guess my question for you is... has your doctor suggested surgically removing the adrenal gland with the tumour? I know before we had the results from the biopsy so didn't know whether the tumour was benign or malignant, my onc had said that if the colon cancer had spread to the adrenal gland, as well, we know I have a lesion on my lung, then there wouldn't be anything they could do except to try chemo. This kind of freaked me out... I couldn't understand why either tumour couldn't be surgically removed. But the explanation was that if the cancer was spreading, then surgery isn't going to help because it would spring up somewhere else... so chemo would do the same as surgery. But, once they got the results back, my onc called a conference with colleagues and other specialists and all decided that it would be worth removing both tumours.

    Did your doctor say why they couldn't remove the two remaining lung tumours and remove the gland with the small tumour? You can live just fine with only one adrenal gland.. the remaining one will take over producing the hormones that adrenal glands produce. Even if they had to take out both adrenal glands, then they would put you on Hormone Replacement Therapy (HRT) which is different than the HRT that some women take when they are suffering with menopause.

    Sorry to have babbled on this much, but since I am going through this myself right now and the plan is to remove the adrenal gland and tumour, and then remove the tumour on the lung... have you asked your doctor if this is a possibility for you and if not, why?

    Cheryl
    Vancouver, B.C.
  • VMoles
    VMoles Member Posts: 3
    #4
    CherylHutch said:

    I can't help with the Erbitux since I have not been on it... but it looks like Monica has given you good info about it.

    BUT, I sure understand and empathize about the spread to the lung and adrenal gland. The CEA can sure be different for different people.

    I was diagnosed with Stage III colon cancer in Dec/06, had surgery to remove the tumour and a resection to the intestine/colon. Once I was healed from the surgery, I did 8 months of chemo and 6 weeks of daily radiation. I finished my chemo at the end of Oct/07. At that time, my CEA was 2.7 In Dec/07 I had a CAT scan (came back clear) and my CEA was 6.0 My onc said that we wouldn't worry about it, it could be just one of those flukey things. I went to Hawaii in January and although I enjoyed myself, I just felt "off"... nothing I could really pinpoint. When I got back at the end of Jan, my CEA was 18.0, three times what it was in Dec. So my onc ordered a PET/CT scan.

    The scan showed a small 1/2" tumour in my right lung and my right adrenal gland lit up. Now here's where it gets a little complicated. I have a growth/tumour on my right adrenal gland but it has been there for over 7 years. The first CAT scan I have ever had in my life was in 2001 after a hysterectomy. The growth showed up then. It has been benign all these years so it came as a complete surprise that it lit up on the PET scan. My onc then ordered a bunch of blood/urine tests to see if it would be safe to do a fine needle biopsy... which it was, so I had that done about 3 weeks ago. The results from the biopsy showed that the cells from the tumour tested positive, but they don't know yet if the cancer in this tumour is a spread of colon cancer, or a spread of lung cancer (we don't know yet if the lung lesion is a primary cancer or a spread of the colon cancer) or if it is a primary cancer itself.

    So, we have a plan. I met with the surgeon this morning who is going to do surgery to remove my right adrenal gland and the tumour. He is going to try and do it laparoscopically (sp?) which is a less invasive surgery and the recovery will be quicker. We tentatively are planning to do this at the end of May/beginning of June. Once I have recovered from this surgery, a different surgeon will then do the lung surgery and remove the small 1/2" lesion. The rest of me seems to be fine with no sign of disease (knock on wood).

    So, I guess my question for you is... has your doctor suggested surgically removing the adrenal gland with the tumour? I know before we had the results from the biopsy so didn't know whether the tumour was benign or malignant, my onc had said that if the colon cancer had spread to the adrenal gland, as well, we know I have a lesion on my lung, then there wouldn't be anything they could do except to try chemo. This kind of freaked me out... I couldn't understand why either tumour couldn't be surgically removed. But the explanation was that if the cancer was spreading, then surgery isn't going to help because it would spring up somewhere else... so chemo would do the same as surgery. But, once they got the results back, my onc called a conference with colleagues and other specialists and all decided that it would be worth removing both tumours.

    Did your doctor say why they couldn't remove the two remaining lung tumours and remove the gland with the small tumour? You can live just fine with only one adrenal gland.. the remaining one will take over producing the hormones that adrenal glands produce. Even if they had to take out both adrenal glands, then they would put you on Hormone Replacement Therapy (HRT) which is different than the HRT that some women take when they are suffering with menopause.

    Sorry to have babbled on this much, but since I am going through this myself right now and the plan is to remove the adrenal gland and tumour, and then remove the tumour on the lung... have you asked your doctor if this is a possibility for you and if not, why?

    Cheryl
    Vancouver, B.C.

    Thanks for responding. My onc seems to think that surgery is not going to help because it will just show up somewhere else like you said. I have contacted my surgeon at Cleveland Clinic and waiting to get an appointment to get a second opinion. It's really hard to think this thing can be fatal. People say I look great, I feel good and I have no pain. My doctors all say that I am the healthiest looking sick person they see. I want them to take the adrenal tumor out but they won't do it here. Have your every been told that the CEA can elevate if you have infection? I had the respiratory bug that a lot of folks got and my CAT even said that I had pnemonia in my rt. lung. I just wonder if my high CEA could be because of some of this. Thanks again for taking time to chat.

    Also, thanks Monica for the info about Erbitux. Did you have any problem with the first treatment. They are only giving it to me by itself because the onc says that the other chemos are not working. I keep reading about all the bad things that can happen the first time.

    I know this is out of my control and I am not in charge. Thanks for your support. Vickie

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