I'm a little discouraged

antcat
antcat Member Posts: 270
Hi everyone, I guess I'm just getting a little discouraged and a little nervous because my CT scan is next week. I've been on so many different chemos since the fall of last year including Avastin and the tumors have grown a little. I guess I would have liked to hear, they shrunk. I guess I'm getting used to the disappointment and this time around I'm not getting my hopes up. I know it isn't good to feel that way, but how much disappointment can a person take. I was on a teleconference last nite for a telephone support group I belong to and a dr. from San Diego spoke about ovarian cancer. He was very informative and was very willing to answer questions. I asked him a question about Avastin, as I had read that once a person goes off of Avastin, (which I had to because being on it 6 months, some tumors still grew slightly), would the tumors grow back faster. I know I read that somewhere in an article about Avastin. And, he confirmed what I read, that yes it could happen. I guess I shouldn't have asked the question, if I didn't want to hear the answer. But, I am kind of sorry I ever went on the Avastin, probably they would have still grown, but who knows. I'm now on Taxotere only and he said that more and more single agents are being used, I think he called them dose dense. But, either I'm on too low a dose or I don't know, I don't think it's working. I think medical oncologists just need to find the correct chemo for it to work and I don't know if they ever will. I know someone wrote on this site once before, and it is true cancer is a moneymaker and I don't think they will ever find a cure. I guess I'm just feeling sorry for myself, sorry for the long note. Just wondering if anyone else was on Avastin, then got off of it and how did it affect the tumors.

Comments

  • clamryn
    clamryn Member Posts: 508
    I know how you feel
    I know how you feel. I too was Avastin alone and it was working and then it quit working and they took me off. My tumors had grown and I had more. I am definitely not a fan of Avastin and feel I wasted my time.
    I am also on the taxotere but not on a dense dose. Looks like both of us are on the same road.

    After my next treatment which will be in a couple of weeks, my doctor will be doing a PET/Scan and we will know if it is working. I do feel more confident with this than I did with the Avastin.


    ((((Hugs to you))))
    Linda
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    clamryn said:

    I know how you feel
    I know how you feel. I too was Avastin alone and it was working and then it quit working and they took me off. My tumors had grown and I had more. I am definitely not a fan of Avastin and feel I wasted my time.
    I am also on the taxotere but not on a dense dose. Looks like both of us are on the same road.

    After my next treatment which will be in a couple of weeks, my doctor will be doing a PET/Scan and we will know if it is working. I do feel more confident with this than I did with the Avastin.


    ((((Hugs to you))))
    Linda

    this is common
    to feel discouraged and anxious. I will be praying for a clear scan. Prayers do work..val
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    clamryn said:

    I know how you feel
    I know how you feel. I too was Avastin alone and it was working and then it quit working and they took me off. My tumors had grown and I had more. I am definitely not a fan of Avastin and feel I wasted my time.
    I am also on the taxotere but not on a dense dose. Looks like both of us are on the same road.

    After my next treatment which will be in a couple of weeks, my doctor will be doing a PET/Scan and we will know if it is working. I do feel more confident with this than I did with the Avastin.


    ((((Hugs to you))))
    Linda

    Advastin
    ok you all now have me scared I am on taxol/carbo with advastin. I have had three treatments of the advastin and will have two more with the taxol/carbo and then five of just the advastin. The combo has worked very well for me my numbers dropped from 2000 to 67 after two treatments and then to 14 after the third. Now I am worried about the advastin and if I should stay one it.

    Anne
  • Tethys41
    Tethys41 Member Posts: 1,382 Member

    Advastin
    ok you all now have me scared I am on taxol/carbo with advastin. I have had three treatments of the advastin and will have two more with the taxol/carbo and then five of just the advastin. The combo has worked very well for me my numbers dropped from 2000 to 67 after two treatments and then to 14 after the third. Now I am worried about the advastin and if I should stay one it.

    Anne

    Take a deep breath
    Anne,
    I was on the same treatment you are on for 8 cycles, followed by 11 cycles of Avastin alone. I acheived remission, and am still there, almost a year beyond the last dose of Avastin. I'm not completely familiar with the other two ladies situation who have posted here, but it sounds as if they are having trouble finding a drug that works for them. I also am not familiar with the research to which they are referring, that the tumors will grow faster once the Avastin is discontinued, but if the tumors are gone and you acheive remission, it does not seem as if it would be an issue.
  • antcat
    antcat Member Posts: 270

    Advastin
    ok you all now have me scared I am on taxol/carbo with advastin. I have had three treatments of the advastin and will have two more with the taxol/carbo and then five of just the advastin. The combo has worked very well for me my numbers dropped from 2000 to 67 after two treatments and then to 14 after the third. Now I am worried about the advastin and if I should stay one it.

    Anne

    Anne
    Everyone is different, so please don't be afraid of the Avastin. I don't remember where I originally read about when Avastin is stopped and tumors. The dr. on the teleconference last nite, just confirmed for me what I read, but everyone is different. I feel the same as Linda, I am not a fan of Avastin, and I think when oncologists start a person on a new protocol, the patient should get a little more information. I was on Avastin for 6 months, and while some tumors were stable, (don't know if it was Avastin or not), other tumors showed some growth, so Avastin was stopped. The dr. on the teleconference last nite informed us that Avastin is not yet FDA approved for Ovarian Cancer but I have seen many, many people on this board that have or are receiving this protocol. So, please don't worry and I would follow your dr advice.
  • taiga
    taiga Member Posts: 75 Member
    Avastin
    I was optimally debulked and dx. with stage 3, grade 3 clear cell last July. I had IV/IP taxol, cisplatin and Avastin until December 2010 and have continued on Avastin alone since then, every 3 weeks. I'll finish with that end of November. My CA-125 has remained around 6-8 while on the Avastin. Just wondering what will happen after November. Anyone on the board who had a successful surgery and completed treatment and NOT had a recurrence?
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    taiga said:

    Avastin
    I was optimally debulked and dx. with stage 3, grade 3 clear cell last July. I had IV/IP taxol, cisplatin and Avastin until December 2010 and have continued on Avastin alone since then, every 3 weeks. I'll finish with that end of November. My CA-125 has remained around 6-8 while on the Avastin. Just wondering what will happen after November. Anyone on the board who had a successful surgery and completed treatment and NOT had a recurrence?

    No recurrence
    I did not have clear cell and I did not have an optimal surgery. I was diagnosed wtih papillary serous adenocarcinoma stage IIIc in August of '09. Suboptimal debulking followed by the treatment I mentioned above. My CA-125 was low at the end of chemo (<1) and remained low during my Avastin treatments. It very slowly crept up a few points during the first half of this year (reaching 4). I do a lot of integrative things with the hope of preventing recurrence. Recently I started something called Iscador. About a month after starting that, it went back down to 2. I personally belive that an integrative approach is the best insurance with regard to avoiding recurrence.
  • clamryn
    clamryn Member Posts: 508

    Advastin
    ok you all now have me scared I am on taxol/carbo with advastin. I have had three treatments of the advastin and will have two more with the taxol/carbo and then five of just the advastin. The combo has worked very well for me my numbers dropped from 2000 to 67 after two treatments and then to 14 after the third. Now I am worried about the advastin and if I should stay one it.

    Anne

    Dear Anne
    When my doctor first put me on Avastin, he wanted to do Gemzar and Avastin. Insurance company would not approve of both. So I went on Avastin alone. Everything I have read says that Avastin works better with a chemo agent. I feel in my heart that if I would have had both of them together that it would have done some damage to those beastly cancer cells. But my insurance company called the shots. I feel they played with my life.

    Anne, Avastin just didn't work for me but it looks like it is working for you. Your numbers are looking good. We are all different. But if I were you I would be happy with your results and would continue with what you are doing. Listen and talk to your doctor.

    ((((hugs))))
    Linda
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    clamryn said:

    Dear Anne
    When my doctor first put me on Avastin, he wanted to do Gemzar and Avastin. Insurance company would not approve of both. So I went on Avastin alone. Everything I have read says that Avastin works better with a chemo agent. I feel in my heart that if I would have had both of them together that it would have done some damage to those beastly cancer cells. But my insurance company called the shots. I feel they played with my life.

    Anne, Avastin just didn't work for me but it looks like it is working for you. Your numbers are looking good. We are all different. But if I were you I would be happy with your results and would continue with what you are doing. Listen and talk to your doctor.

    ((((hugs))))
    Linda

    Linda
    thanks for your advise and I do believe that the advastian is working well and that is what my doctor expected when he put me on the three chemo drugs. I hate that the insurance companies has so much power over our health care. I feel like they do have the chance to end our lives by simply refusing coverage for medication. In AZ the govenor went one step further. She passed a bill that refuses State health care for people who do not have children at home that they are taking care of. I lost my job due to the cancer I ran a group home for adults with mental handicapps. Because of the cancer I was unable to preform my duties. I was not able to take my clients to doctors appointments, I was not able to focus enought to handle their check books, I was not able to focus enough to manage their online ledgers, and because of the Morphine and oxycodone that I am on I was not allowed to transport my clients (Hell I am not even allowed to transport my self lol). So I went into my FAA office to apply for ACCESS and was told that I could not apply due to not having any childre when I explained that I had stage four ovarian cancer and that I was in the middle of chemo they said they were very sorry and understood where I was coming from but they could not allow me to apply it was out of their hands. I explained that with out chemo I would lose my fight with cancer and again they said they would like to help but their hands were tied because of the goveenors bill.

    Anne
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    antcat said:

    Anne
    Everyone is different, so please don't be afraid of the Avastin. I don't remember where I originally read about when Avastin is stopped and tumors. The dr. on the teleconference last nite, just confirmed for me what I read, but everyone is different. I feel the same as Linda, I am not a fan of Avastin, and I think when oncologists start a person on a new protocol, the patient should get a little more information. I was on Avastin for 6 months, and while some tumors were stable, (don't know if it was Avastin or not), other tumors showed some growth, so Avastin was stopped. The dr. on the teleconference last nite informed us that Avastin is not yet FDA approved for Ovarian Cancer but I have seen many, many people on this board that have or are receiving this protocol. So, please don't worry and I would follow your dr advice.

    Antcat
    thanks for calming me down lol I know Avastin is not FDA appoved yet for Orvarian cancer and that is why my doctor put me in the study. He said Advastin has worked for many other types of cancer and he want to see if it will work for ovarian cancer as well

    Anne
  • Barneygirl
    Barneygirl Member Posts: 90
    I don't have any experience
    I don't have any experience with Avastin, but I wanted to say that I'm praying for you and hope you will get some response soon.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    taiga said:

    Avastin
    I was optimally debulked and dx. with stage 3, grade 3 clear cell last July. I had IV/IP taxol, cisplatin and Avastin until December 2010 and have continued on Avastin alone since then, every 3 weeks. I'll finish with that end of November. My CA-125 has remained around 6-8 while on the Avastin. Just wondering what will happen after November. Anyone on the board who had a successful surgery and completed treatment and NOT had a recurrence?

    I have not recurred
    I have not recurred (diagnosed Sept of 2009, stage IIIc), nor has Annie (Anniecris, Lynbda (AZGramdma), and several others. I am not clear cell, however.

    Carlene
  • jbeans888
    jbeans888 Member Posts: 313
    I just wanted to say I hope
    I just wanted to say I hope your scans go well and you get some good news. It's is discouraging to always get crappy news. I also agree cancer is a huge money maker. It sucks so much, but it is true