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Vectibix / doxycycline

Hi,
Has anyone been on this alone (no irinotecan) and suffered from fatigue?
Thanks! Liz

Comments

  • CherylHutch
    CherylHutch Member Posts: 1,375
    Vectibix alone
    Hi Liz,

    I'm on Vectibix all by itself and definitely not with Irinotecan. I had a horrible time on irinotecan right from the first treatment, ended up with a severe asthmatic reaction to it and I have never had asthma in my life. I was taken off Irinotecan at the end of June, given the summer off to recover from the horrible reaction. The asthma left almost immediately. The bronchitis hung around for the summer and ended in a very productive cough for Aug, Sept and Oct. I can say that it's only been this past week that the cough has almost completely disappeared, and so have the bronchialspasms. I will NEVER go on irinotecan again ;)

    Starting in September, I was started on Vectibix by itself... every two weeks. Last Friday was my 4th Vectibix treatment!

    The bad news... the "rash" which I have gotten on my back and stomach is driving me crazy it's so itchy!! And it's hard to scratch it (not that we should) because I have gotten the nasty skin peeling around the nail beds of my fingers, which is very, very sore. I can't touch anything... it's like touching things with raw nerves exposed. So scratching the rash is not an option .

    BUT, the good news is, after the first treatment, my CEA went from 52 down to 40. After the third treatment, my CEA is down to 20. So I'm thrilled with how it's working and bringing down my CEA so quickly. My CEA tends to be a very accurate indicator for me. I will be getting a CAT scan at the end of November so that will really be the proof that the Vectibix is working and the tumours in the lungs are stable and hopefully shrinking.

    As for fatigue... I don't get the classic Chemo Fatigue where I am so tired walking from the living room to the bedroom is a challenge. BUT, I find that I don't have my usual energy. Rather than heading out every day to see what adventures lie ahead, it's more a "What do I have to do today? If I don't HAVE to go out, I'm totally content to stay at home, read, watch some TV, do some work from home, or have a nap". So yes, I notice that some days I don't have my usual energy... but I do not get as exhausted/fatigued as I did with some of the other chemos.

    Not sure if this helps... but it's just my experience with the Vectibix.

    Cheryl in Vancouver
  • idlehunters
    idlehunters Member Posts: 1,787

    Vectibix alone
    Hi Liz,

    I'm on Vectibix all by itself and definitely not with Irinotecan. I had a horrible time on irinotecan right from the first treatment, ended up with a severe asthmatic reaction to it and I have never had asthma in my life. I was taken off Irinotecan at the end of June, given the summer off to recover from the horrible reaction. The asthma left almost immediately. The bronchitis hung around for the summer and ended in a very productive cough for Aug, Sept and Oct. I can say that it's only been this past week that the cough has almost completely disappeared, and so have the bronchialspasms. I will NEVER go on irinotecan again ;)

    Starting in September, I was started on Vectibix by itself... every two weeks. Last Friday was my 4th Vectibix treatment!

    The bad news... the "rash" which I have gotten on my back and stomach is driving me crazy it's so itchy!! And it's hard to scratch it (not that we should) because I have gotten the nasty skin peeling around the nail beds of my fingers, which is very, very sore. I can't touch anything... it's like touching things with raw nerves exposed. So scratching the rash is not an option .

    BUT, the good news is, after the first treatment, my CEA went from 52 down to 40. After the third treatment, my CEA is down to 20. So I'm thrilled with how it's working and bringing down my CEA so quickly. My CEA tends to be a very accurate indicator for me. I will be getting a CAT scan at the end of November so that will really be the proof that the Vectibix is working and the tumours in the lungs are stable and hopefully shrinking.

    As for fatigue... I don't get the classic Chemo Fatigue where I am so tired walking from the living room to the bedroom is a challenge. BUT, I find that I don't have my usual energy. Rather than heading out every day to see what adventures lie ahead, it's more a "What do I have to do today? If I don't HAVE to go out, I'm totally content to stay at home, read, watch some TV, do some work from home, or have a nap". So yes, I notice that some days I don't have my usual energy... but I do not get as exhausted/fatigued as I did with some of the other chemos.

    Not sure if this helps... but it's just my experience with the Vectibix.

    Cheryl in Vancouver

    Hey Liz...
    I too am on Vectibix alone. I get it every 2 weeks and have had 5 treatments. My CEA is also declining but I do not know yet if that is from the Vectibix or the recent Cyberknife I had to the left lung. This month I will be getting Cyberknife to the right lung so it may be a while before I know if this drug is working for me. I pray it is as it is the most mild chemo drug I have had thus far. I have noticed that later on in the day after I have had my treatment that I get tired...but thats it for me. I have got the rash in the strangest places. Not the face like I was expecting but my butt cheeks....and nipples....yes....nipples. Now can you imagine what I look like out in public scratching...LOL. The rash has not been bad...manageable with the ointment from the doc...but agravating at times. I have 1 finger that has what looks like a paper cut on it and thats it as far as nails go. My biggest thing with the Vectibix is the excessive dry skin. I feel like a prune...everywhere. I take special baths with oil and treatments in the water...then soak down with baby oil...they shower some of that off in cool water...then blot dry...then apply medicine...then apply 2 skin creams.... My skin STILL real dry. All in all.... I would rather deal with this that ANY of the side effects I got from Folfiri/Avastin. ANYDAY! so I a hoping it works for me. Thats my quarters worth. Stay in touch and le me know how you are doing. You take care.

    CHERYLHUTCH.... good to see you!

    Jennie
  • Liz2011
    Liz2011 Member Posts: 15

    Hey Liz...
    I too am on Vectibix alone. I get it every 2 weeks and have had 5 treatments. My CEA is also declining but I do not know yet if that is from the Vectibix or the recent Cyberknife I had to the left lung. This month I will be getting Cyberknife to the right lung so it may be a while before I know if this drug is working for me. I pray it is as it is the most mild chemo drug I have had thus far. I have noticed that later on in the day after I have had my treatment that I get tired...but thats it for me. I have got the rash in the strangest places. Not the face like I was expecting but my butt cheeks....and nipples....yes....nipples. Now can you imagine what I look like out in public scratching...LOL. The rash has not been bad...manageable with the ointment from the doc...but agravating at times. I have 1 finger that has what looks like a paper cut on it and thats it as far as nails go. My biggest thing with the Vectibix is the excessive dry skin. I feel like a prune...everywhere. I take special baths with oil and treatments in the water...then soak down with baby oil...they shower some of that off in cool water...then blot dry...then apply medicine...then apply 2 skin creams.... My skin STILL real dry. All in all.... I would rather deal with this that ANY of the side effects I got from Folfiri/Avastin. ANYDAY! so I a hoping it works for me. Thats my quarters worth. Stay in touch and le me know how you are doing. You take care.

    CHERYLHUTCH.... good to see you!

    Jennie

    Thanks for sharing your
    Thanks for sharing your experiences. I am not the patient, my mum is (was tempted to write unfortunately). This is the 3rd line treatment for mum, nothing else on offer... She had a good day yesterday but it was short-lived and now she feels totally run down again. She's also very depressed. How could she not be, knowing that it's only a matter of time now. I try and keep her spirits up (from a distance as we live in different countries) but am freaking out at the idea that this fatigue is the beginning of the end. Diarrhea aside she's had no symptoms from the cancer so far. Her skin is getting very dry but no rash so far so hopefully the antibiotics are keeping this under control. I have read that the doxycycline can trigger fatigue and was wondering if others had experienced it.
    Only time will tell I suppose.
    Keep up the good fight ladies!
    Liz
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    Howdy all
    Hi Liz, and everyone else. I started on Vectibix back in mid-June. At that time, my CEA was 1997 and my liver function was near failure (I guess about a week to ten days away.) After several treatments, my count dropped to 36 but because of changes in my 5FU I'm up to 214 now.

    I'm hoping that my reaction to Vectibix is the exception rather than the rule because the cracks and splits in my hands and feet have become so bad that using them has become brutally painful. I can't even use moisturizers on them anymore because they are so sensitive. I just had my latest treatment this past week and now the skin on my arms, back and belly are showing signs of splitting. I'm wondering if anyone else has had this severe of a reaction?

    Liz, to answer your question: yes, I get my infusion on Tuesdays and wear my pump for 48 hours. I'm usually pretty tired until at least Saturday or Sunday after infusion. In spite of how tired I am, I just cannot sleep well and only manage from 3 to 5 hours of sleep a day.

    Just some background (since this is my first post here) I was diagnosed with Stage IV colo/rectal cancer in May 2010, it has spread to my liver and right lung. Radiation therapy negated the need for surgery and I've been responding well to chemo. My WBC count did drop pretty drastically in Sept. 2010 and I was hospitalized for several days. Because of the low WBC, I went from mid April to mid June without chemo and that's why my CEA went so high. I had also moved from Arizona to Utah during that time and needed to get hooked up with a new oncologist and treatment center.

    God Bless to all,

    Ray