Anyone had Vectibix/Panitumumab?

JanJan63
JanJan63 Member Posts: 2,478 Member
in Colorectal Cancer #1

Got my CT scan results today. It was quite the reality check. Apparently I've been living in a fool's paradise and it was time to hear the truth. I was convinced the spots in the lung that had the blood clot were scars. One has decided to start growing quickly and has doubled in size in three months. Also, my CEA has gone up to 5.9. It's never been above 2.

So I start the above treatment on Feb 10. It's given by intravenous at the cancer clinic in the chemo lab. She says its not chemo but it still will have some side effects with a rash being the most likely. Apparently it's like a teenager's acne and will be on the face so as someone working with the public that's going to be wonderful.

Has anyone had any experience with this?

Thanks!

Jan

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Comments

  • NewHere
    NewHere Member Posts: 1,428 Member
    #2
    Ah Kr@p

    Sorry to hear about this J.J.  I have not been on those drugs, so cannot comment.  My thoughts are with you.  

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited February 2017 #3
    NewHere said:

    Ah Kr@p

    Sorry to hear about this J.J.  I have not been on those drugs, so cannot comment.  My thoughts are with you.  

    Thanks. The onc says this

    Thanks. The onc says this stuff is 60% effective and chemo would have been 80%. I'm having a real internal battle right now with being sad and upset and being angry. I also have a kidney issue that's going to have to be dealt with. Just feeling crappy right now...

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #4
    Sorry Jan.....not good news

    Sorry Jan.....not good news but the treatment should help. I also have  kidney cyst, they are keeping an eye on it and so far it hasn't grown. you are a strong person so just keep on being positive. 

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    Oh Jan!

    I am SO SO VERY sorry to hear this news.  

    The horrors of Cancer is that it can turn on a dime.  I don't think you were living in a 'fools paradise', you were living positivly and that is a good thing.  Face this new challange without looking back and thinking 'What if?'. 

    I have read many here who have had the rash. Phil64 is one of them, though he has not posted for a while.  I'm sure others will post soon with their advice on how to deal with it. 

    Do you still have your port? Can they not use a port? 

    You are in my thoughts and prayers. 

    TRU

  • DTrout
    DTrout Member Posts: 3
    #6
    Vectibix

    i am currently on vectibix, and yes there will be a rash. Mine was mainly from scalp to knees. They told me to NOT use an astringent as you would for acne. You should moisturize The bumps on my scalp got quite painful and sensitive. They say the worse the rash the better it's working. And mine eventually plateud and lessened. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #7
    Thanks for the responses! Did

    Thanks for the responses! Did the rash get less as time went by DTrout? They said it will.

    Tru, I had my port removed last year when it started coming out through my skin. I found that it was still painful to get poked anyway and the cream that's supposed to numb it didn't work at all. My biggest regret right now is that I didn't get the stent for my kidney when I should have. Now they don't know if it can be saved. But I wanted to wait to see if I really needed to have one. Well, that answer is loud and clear now.

    Ugh, stupid cancer. How I hate you...

    Jan

  • blessed39
    blessed39 Member Posts: 90 Member
    edited February 2017 #8
    "How I Beat Stage Four Colon Cancer"

    Dear JanJan63.

    Dear impactzone. If you would be interested in reading my story "How I Beat Stage Four Colon Cancer" just go to my page

    blessed39 and click on blog and my story will come up. I don't give medical advice, just what worked for me. God bless

    blessed39

  • DTrout
    DTrout Member Posts: 3
    edited February 2017 #9
    JanJan63 said:

    Thanks for the responses! Did

    Thanks for the responses! Did the rash get less as time went by DTrout? They said it will.

    Tru, I had my port removed last year when it started coming out through my skin. I found that it was still painful to get poked anyway and the cream that's supposed to numb it didn't work at all. My biggest regret right now is that I didn't get the stent for my kidney when I should have. Now they don't know if it can be saved. But I wanted to wait to see if I really needed to have one. Well, that answer is loud and clear now.

    Ugh, stupid cancer. How I hate you...

    Jan

    Vectibix rash.

    yes it did after a couple months. But it was definitely no fun in the meantime. Not that any of this is. Going up Monday for treatment #12 of folfiri and vectibix, had 12 treatments of folfo with about a three month break in between next cycle. Went from being in remission after my hemicolectomy to stage 4 with peritoneal mets In about 8 months AFTER 6 months of folfox

  • Takemeom
    Takemeom Member Posts: 14
    #10
    vectibix and irenotecan

    third phase treatment with vectibix, my cea went from 25 to 5 and creeped back up to 12 my doc wants to add irenotecan 1/2 dose , which in my reading doesnt do anything significant, i am worn out from 5 years of treatment, anyone doing both drugs? it sounds awful and maybe id be better off feeling good for a while, and how long is that while? for vectibix, my eyelashes have grown crazy, i had to have my friend trim them!

  • BrianChristopher
    BrianChristopher Member Posts: 23
    #11
    JanJan63 said:

    Thanks for the responses! Did

    Thanks for the responses! Did the rash get less as time went by DTrout? They said it will.

    Tru, I had my port removed last year when it started coming out through my skin. I found that it was still painful to get poked anyway and the cream that's supposed to numb it didn't work at all. My biggest regret right now is that I didn't get the stent for my kidney when I should have. Now they don't know if it can be saved. But I wanted to wait to see if I really needed to have one. Well, that answer is loud and clear now.

    Ugh, stupid cancer. How I hate you...

    Jan

    prayers for you Jan

    Prayers for you Jan

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #12
    Thanks for all of your

    Thanks for all of your support. I had the first treatment today and didn't have any reactions in the chair so next time they can do it in half an hour instead of an hour. My husband is heading out to get my prescriptions for the rash in case I get it. 90% of people get it, it just to varying degrees.

    The IV insert wasn't too bad. She suggested I drink more beforehand next time so I'm hydrated but we're an hour drive to the cancer centre and I don't want to have to stop to go to the bathroom in a gas station rest room. Nobody told me that the parking lot is closed and under renovation for the next three years. My daughter took me in her big truck and there was nowhere to park it as there is just a parkade. The parking lot was always full and held hundreds of cars so I don't know what people are doing now.

    Anyway, the first treatment is done and I feel better knowing that I'm doing something proactive to deal with the cancer. I'm exhausted because of the stress, though. It always tires me out.

    And while I was typing this my husband had a dozen roses delivered to the door. He also cleaned the house yesterday.:)  

  • mokomapa
    mokomapa Member Posts: 24
    edited February 2017 #13
    Thinking of you

    Jan,

    Glad to hear the first treatment wasn't too bad.  Just wanted to let you know I was thinking about you today.  Enjoy those roses!!!

    Tom

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #14
    One down.....

    Don't know how many to go, but one down is good. 

    I hope that you have a comfortable, sleep filled night. 

    We're thinking of you. 

    TRU

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #15
    Canadian Sandy said:

    Sorry Jan.....not good news

    Sorry Jan.....not good news but the treatment should help. I also have  kidney cyst, they are keeping an eye on it and so far it hasn't grown. you are a strong person so just keep on being positive. 

    Thank you Sandy!

    Thank you Sandy!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #16
    Trubrit said:

    One down.....

    Don't know how many to go, but one down is good. 

    I hope that you have a comfortable, sleep filled night. 

    We're thinking of you. 

    TRU

    Thank you so much. I love how

    Thank you so much. I love how happy and healthy you look in your picture. I have a suspicion I'll be on this for some time and maybe maintenance for a longer time. Just a gut feeling.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #17
    I'm posting this in case at

    I'm posting this in case at some point someone looks it up on here and wants the information. There doesn't seem to be any information on this treatment on here. 

    My first treatment went fine. It took an hour. Because I had no side effects during the treatment- swelling of lips and other allergic reactions- it will take just half an hour next time.

    Today is the third day after the first treatment and I believe I'm deveoloping the rash. My upper chest is sprinkled with small red dots. It's just a discolouration at this point and it's not bothersome or itchy. I also have a couple of spots that feel like skin eruptions so I used the cortizone cream I was prescribed last night and will again this morning.

    I hope it's true that if you get the rash it means the stuff is working. Then if I get it bad I'll at least have that to make me feel better about it.

  • Colonchick
    Colonchick Member Posts: 36 Member
    #18
    I'm sorry to hear and sending

    I'm sorry to hear and sending positive thoughts your way!!!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #19
    JanJan63 said:

    Update for future reference.

    Update for futire reference. Day four. Rash is all over my chest and neck and is mostly made uo of tiny red dots. Some are eroptions like tiny whiteheads. My chin, besisde my nose and my forehead have become worse as the day has progressed. It feels like I have something stuck on my skin because there are so many. Most are tiny whiteheads. They look angry and irritated. I'm using the cream I was prescribed but at this point it's just getting worse. Totally looks like teenage acne like they said. I never had it as a teenager so I guess now it's my turn. The rest of my skin that's not affected seems very sensitive. It almost hurts to rub my scalp and brush my hair. No idea if this is another part of it. 

    I will message Phil64

    He had the rash and may be able to suggest something.  It sounds truly awful!

    TRU

  • Phil64
    Phil64 Member Posts: 838 Member
    #20
    JanJan63 said:

    Update for future reference.

    Update for futire reference. Day four. Rash is all over my chest and neck and is mostly made uo of tiny red dots. Some are eroptions like tiny whiteheads. My chin, besisde my nose and my forehead have become worse as the day has progressed. It feels like I have something stuck on my skin because there are so many. Most are tiny whiteheads. They look angry and irritated. I'm using the cream I was prescribed but at this point it's just getting worse. Totally looks like teenage acne like they said. I never had it as a teenager so I guess now it's my turn. The rest of my skin that's not affected seems very sensitive. It almost hurts to rub my scalp and brush my hair. No idea if this is another part of it. 

    Erbitux Rash

    Jan, Sue just messaged me. I'm so sorry you are dealing with the ugly rash. I think you already know that I too had pretty severe rashes from the Erbitux. I also had unbelievable positive results using this one drug. Such good results that my on (Dr. Krauss at University of Michigan Health Care) treated me for an entire year with this one drug alone. Twelve monthly treatments. 

    This month actually marks one year NED with no treatments (my last Erbitux treatment was last February).

    i have to tell you that I don't think the cream helped a ton. But I did exactly what my doctor ordered. Which was to clean my skin with soap (mostly used tea tree soap) and a wash cloth. Rubbing to make sure it was clean and then putting on a thin layer of the medicated cream. Then after that dried putting on regular cream to keep my skin very moist. I tried a ton of creams and settled on the coconut cream from Sams club. I thought it did the best job. And it also was one of the less expensive. 

    My onc and his assustant constantly reminded me that this was not acne and required keeping the skin moist. Kind of opposite how you treat acne. 

    Also, very IMPORTANT. My onc did lower my dose at one point. And skipped a treatment a couple of times to allow my skin a break. 

    I tried head and shoulder shampoo. But I really don't think that helped all that much. like I said. I don't think the medicated cream helped much either. But I do think keeping moisture on my skin did help a lot. 

    i can also say that the rash cleared up pretty fast when I stopped (Thank God).

    i hope the Erbitux will help you as much as it seemed to help me. 

    Sending you much love and light!!!

    Phil

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #21
    Phil64 said:

    Erbitux Rash

    Jan, Sue just messaged me. I'm so sorry you are dealing with the ugly rash. I think you already know that I too had pretty severe rashes from the Erbitux. I also had unbelievable positive results using this one drug. Such good results that my on (Dr. Krauss at University of Michigan Health Care) treated me for an entire year with this one drug alone. Twelve monthly treatments. 

    This month actually marks one year NED with no treatments (my last Erbitux treatment was last February).

    i have to tell you that I don't think the cream helped a ton. But I did exactly what my doctor ordered. Which was to clean my skin with soap (mostly used tea tree soap) and a wash cloth. Rubbing to make sure it was clean and then putting on a thin layer of the medicated cream. Then after that dried putting on regular cream to keep my skin very moist. I tried a ton of creams and settled on the coconut cream from Sams club. I thought it did the best job. And it also was one of the less expensive. 

    My onc and his assustant constantly reminded me that this was not acne and required keeping the skin moist. Kind of opposite how you treat acne. 

    Also, very IMPORTANT. My onc did lower my dose at one point. And skipped a treatment a couple of times to allow my skin a break. 

    I tried head and shoulder shampoo. But I really don't think that helped all that much. like I said. I don't think the medicated cream helped much either. But I do think keeping moisture on my skin did help a lot. 

    i can also say that the rash cleared up pretty fast when I stopped (Thank God).

    i hope the Erbitux will help you as much as it seemed to help me. 

    Sending you much love and light!!!

    Phil

    Phil, thank you so much for

    Phil, thank you so much for your reply! They said the skin rash would get less and less as time goes by. You didn't find that was the case? I have a CT scan booked for May 3 and then we'll see if it's working. Wow, I hope I get as good of results as you did! My onc said it could shrink the tumour by 60%, not that it could get rid of it altogether. Of course, as we all know, treatments don't necessarily work the same for everyone. But thank you for giving me hope! Hope is the greatest gift someone can give us, after life.

    At the moment I'm finding that my scalp is itchy but if I scratch it my skin is tender. The corners of my nose hurt like when I've had a bad cold and have blown my nose until it's raw. Not terrible but not pleasant, either.

    And thank you so much for the tip about moisturizing. I thought it was best to just leave it alone but the skin feels very tight like it's dry and a moisturizer would feel better for sure.

    Thanks again so much!! You have given me a reason to feel hopeful and I appreciate that more than I can say. I'm crying with gratitude right now. We women are like that, you know.

    Hugs Phil! Thank you so much!

    Jan

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