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Ocrevus and chance for other malignicies in addition to breast cancer

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    Ocrevus and chance for other malignicies in addition to breast cancer

    Hello,
    It is really disappointing that Ocrevus not only makes a person more prone to being at risk for Breast Cancer, but for other cancer's as well.

    My mom died from Pancreatic Cancer in 2005. I had my first 300 mcg infusion on 5/3/18 and am having my second 300 mcg infusion on 5/17/18. I really had no side effects from the infusion except for mild flushing on my left facial cheek which subsided on our drive home. I was very pleased.

    Just nervous about the chances of developing CA that is all I would need. Has anyone been on Ocrevus for about a year? What are your thoughts or worries about this?

    Thanks
    Blue Satin

    #2
    Hi bluesatin, where did you read this? I know about breast cancer side effect and yes it concerns me but I don't dwell on it because I can't take ty anymore and I want to be on one of the better med.
    God Bless Us All

    Comment


      #3
      Reg53

      Originally posted by REG53 View Post
      Hi bluesatin, where did you read this? I know about breast cancer side effect and yes it concerns me but I don't dwell on it because I can't take ty anymore and I want to be on one of the better med.
      Hi,
      It is listed on the packet insert for Ocrevus. I feel the same now. Not dwelling on it anymore. Just taking one day at a time.
      God Bless
      Blue Satin

      Comment


        #4
        https://medivizor.com/blog/SampleLib...-of-rituximab/

        Comment


          #5
          Also lost a parent to pancreatic cancer- Dad 2003. Have been on Ocrevus since 4/17 and am getting mammograms, 3D digital mammogram and ultrasounds. The ultrasounds are about 4 months after the others and that way I´m getting checked 2x per year.

          Having seen what pancreatic cancer does, I avoid added sugars and hope for zee best. I think Johns Hopkins is coming up with a blood test. There is a doctor couple coming up with an alogorithm to look at all scans and dx pancan at a much earlier stage.

          Comment


            #6
            Originally posted by Temagami View Post
            Also lost a parent to pancreatic cancer- Dad 2003. Have been on Ocrevus since 4/17 and am getting mammograms, 3D digital mammogram and ultrasounds. The ultrasounds are about 4 months after the others and that way I´m getting checked 2x per year.

            Having seen what pancreatic cancer does, I avoid added sugars and hope for zee best. I think Johns Hopkins is coming up with a blood test. There is a doctor couple coming up with an alogorithm to look at all scans and dx pancan at a much earlier stage.
            Hi,
            Sorry about your Dad. I hope that they come up with a blood test to diagnose pancreatic cancer. I had my 3d mammogram done last month. All came back fine. I go back for my next Ocrevus Infusion beginning of November. I have had no side effects, thank goodness. I feel really good. What positive results have you had with Ocrevus?

            Thanks
            Blue Satin

            Comment


              #7
              I believe it is prudent to monitor closely for breast cancer since there were more cancer cases, and especially breast cancer, which showed up with Ocrevus during trials than with the two comparators which were Avonex and placebo.

              We should remember that in trials… RRMS Ocrevus (n-825, the number taking it) was compared to Avonex (n-826) and in PPMS (n-486) Ocrevus was compared to placebo (n-239).

              Quoting from page 140 of the Ocrevus Assessment Report by the European Medicines Agency November 2017 (the italics are mine) … QUOTE “Malignancies

              RMS (relapsing MS) … the rate per 100PY (PY = patient years) of malignancy was 0.14 … for the IFN (Avonex) group and 0.28 for the OCR group.

              PPMS (Primary Progressive MS) The rate per 100PY of malignancy events was 0.30 … for the placebo group and 0.92 for the OCR group.” End Quote

              http://www.ema.europa.eu/docs/en_GB/...C500241126.pdf

              Quoting, from pages 149 and 150 “ At least 1173 MS patients have been exposed to the proposed dose 600 mg dose for more than 95 weeks. However, long-term exposure data do not allow conclusive evaluation of the risk of malignancies as well as rare risks, such as PML. The RMS and PPMS patient population included in the controlled MS trials is a selected patient population, not entirely representative of the MS patient population...

              For instance median age of PPMS enrolled patients was 46 years and the baseline EDSS score of patients included in the studies was up to 6.5 in PPMS and 5.5 in RMS. Patients with a history of recurrent or chronic infections or immunodeficiency, and patients with a history of ischemic cerebrovascular disorders were excluded...

              There is no information regarding patients older than 55 years. The absence of safety data in patients ≥55 years of age requires a more cautious approach with regard to the observed imbalance in malignancies, including breast cancer, observed in OCR-treated patients relative to comparator (IFN or placebo), as it is well known that the risk of malignancies increases with age.” End Quote


              I will post a little more extensively in the Ocrevus sticky.

              Comment


                #8
                I was just going to start a post about this. I was told about the chance of breast cancer but since it does not run in my family, my doctor was not concerned. I am now finding out that there were other cancers that were found in patients in the trial and the reason that you are only warned about breast cancer is because 7 patients were diagnosed with that and the other cancers found there only had one or two patients. Here is what was found was sent to me from Genetech:

                1 case of renal carcinoma (a type of kidney cancer)
                1 malignant melanoma (a type of skin cancer)
                2 invasive ductal breast cancers
                1 malignant melanoma (a type of skin cancer) in a patient in OPERA I after about
                one year on Ocrevus
                2 cases of basal cell carcinoma (a type of skin cancer) in OPERA II
                3 basal cell carcinomas (a type of skin cancer)
                1 endometrial adenocarcinoma (a type of cancer that starts in the uterus)
                1 anaplastic large-cell lymphoma (a type of cancer that starts in the lymph nodes)
                1 malignant fibrous histiocytoma (type of cancer that starts in the soft tissues or
                the bone)
                1 metastatic pancreatic cancer (cancer of the pancreas that has spread to other
                parts of the body)
                1 basal cell carcinoma (a type of skin cancer)
                1 squamous cell carcinoma (cancer that begins in squamous cells; squamous cells are found in
                areas such as the skin, or linings of the respiratory or digestive track

                All of this information makes me second guess my decision to go through with this. I am scheduled to have my first half on Friday, I am definitely thinking of postponing it for now until I can wrap my head around whether these risks are worth it. I am 38 years old with a 9 year old son that needs me, that is what scares me the most.

                Am I overreacting being nervous about these findings?

                Comment


                  #9
                  No you’re not overreacting. We all have our reservations. For me I was at the point of having to try something. So far I’m happy I did, but time will tell. Let us know what you decided. My children need me too , although sometimes I wonder LOL , and that was one of the reasons I got it.
                  It was one agains't 2.5million toughest one we ever fought.

                  Comment


                    #10
                    Originally posted by dcancellarich View Post
                    I was just going to start a post about this. I was told about the chance of breast cancer but since it does not run in my family, my doctor was not concerned. I am now finding out that there were other cancers that were found in patients in the trial and the reason that you are only warned about breast cancer is because 7 patients were diagnosed with that and the other cancers found there only had one or two patients. Here is what was found was sent to me from Genetech:

                    1 case of renal carcinoma (a type of kidney cancer)
                    1 malignant melanoma (a type of skin cancer)
                    2 invasive ductal breast cancers
                    1 malignant melanoma (a type of skin cancer) in a patient in OPERA I after about
                    one year on Ocrevus
                    2 cases of basal cell carcinoma (a type of skin cancer) in OPERA II
                    3 basal cell carcinomas (a type of skin cancer)
                    1 endometrial adenocarcinoma (a type of cancer that starts in the uterus)
                    1 anaplastic large-cell lymphoma (a type of cancer that starts in the lymph nodes)
                    1 malignant fibrous histiocytoma (type of cancer that starts in the soft tissues or
                    the bone)
                    1 metastatic pancreatic cancer (cancer of the pancreas that has spread to other
                    parts of the body)
                    1 basal cell carcinoma (a type of skin cancer)
                    1 squamous cell carcinoma (cancer that begins in squamous cells; squamous cells are found in
                    areas such as the skin, or linings of the respiratory or digestive track

                    All of this information makes me second guess my decision to go through with this. I am scheduled to have my first half on Friday, I am definitely thinking of postponing it for now until I can wrap my head around whether these risks are worth it. I am 38 years old with a 9 year old son that needs me, that is what scares me the most.

                    Am I overreacting being nervous about these findings?
                    Hi,
                    Thanks for this information. My mom died from pancreatic cancer when she was 68. She smoked though. I see that 1 person developed pancreatic cancer in clinical trials. I am wondering if that person already had it before going on Ocrevus and just didn't know. I started Ocrevus on 5/3/18. Now you are scaring me.
                    Blue Satin

                    Comment


                      #11
                      Originally posted by dcancellarich View Post
                      I was just going to start a post about this. I was told about the chance of breast cancer but since it does not run in my family, my doctor was not concerned. I am now finding out that there were other cancers that were found in patients in the trial and the reason that you are only warned about breast cancer is because 7 patients were diagnosed with that and the other cancers found there only had one or two patients. Here is what was found was sent to me from Genetech:

                      1 case of renal carcinoma (a type of kidney cancer)
                      1 malignant melanoma (a type of skin cancer)
                      2 invasive ductal breast cancers
                      1 malignant melanoma (a type of skin cancer) in a patient in OPERA I after about
                      one year on Ocrevus
                      2 cases of basal cell carcinoma (a type of skin cancer) in OPERA II
                      3 basal cell carcinomas (a type of skin cancer)
                      1 endometrial adenocarcinoma (a type of cancer that starts in the uterus)
                      1 anaplastic large-cell lymphoma (a type of cancer that starts in the lymph nodes)
                      1 malignant fibrous histiocytoma (type of cancer that starts in the soft tissues or
                      the bone)
                      1 metastatic pancreatic cancer (cancer of the pancreas that has spread to other
                      parts of the body)
                      1 basal cell carcinoma (a type of skin cancer)
                      1 squamous cell carcinoma (cancer that begins in squamous cells; squamous cells are found in
                      areas such as the skin, or linings of the respiratory or digestive track

                      All of this information makes me second guess my decision to go through with this. I am scheduled to have my first half on Friday, I am definitely thinking of postponing it for now until I can wrap my head around whether these risks are worth it. I am 38 years old with a 9 year old son that needs me, that is what scares me the most.

                      Am I overreacting being nervous about these findings?
                      That cancer cases occurred is interesting though the data is challenging to interpret. For example:

                      Were these people on track to get these cancers anyway?
                      Is there any indication of a causal relationship?
                      At what rate did these other malignancies occur in placebo or Rebif?
                      How do these cases compare to the rates in the general population?

                      As to breast cancer, my Neuro said that it was in line with rates in the general population. I believe I heard the same from one of the Dr. Vollmer videos. MyOak is right that it is prudent to monitor.

                      I am scheduled for my first half dose next weekend. I hold some reserved excitement (especially about no longer needing to inject every other week), and some small amount of concern for possible side effects...but my eyes are open.

                      Do let us know what you decided.

                      Comment


                        #12
                        Originally posted by bluesatin View Post
                        Hi,
                        Thanks for this information. My mom died from pancreatic cancer when she was 68. She smoked though. I see that 1 person developed pancreatic cancer in clinical trials. I am wondering if that person already had it before going on Ocrevus and just didn't know. I started Ocrevus on 5/3/18. Now you are scaring me.
                        Blue Satin
                        I didn't mean to scare you just wanted to give you the information I was given from Genetech. There was a post on a facebook Ocrevus page, and two members had developed cancer (1 lung and brain and the other pancreatic) after a year of being on it. Someone suggested calling the drug company and many did and were all given the same information I listed.
                        I opted not to go through with the infusion I was scheduled for and to just stay on Tecfidera for now, at least until there is more information.
                        Good luck to you.

                        Comment


                          #13
                          I don’t mean to scare anyone but check out my response in the thread titled “Quit Ty? ->Ocrevus? Cancer concerns.”

                          I developed gynecological cancer after 9 years on Tysabri. I was advised not to go back on any immunosuppressant medications for fear of a cancer relapse. Until the oncologist said NO WAY, my neurologist had thought Ocrevus might be a possibility but added that the oncologist would not be pleased. Actually the oncologist is not pleased with any MS drugs except Copaxone or interferons which I can’t tolerate. 🙁 So yeah it’s wise to consider a cancer risk. On the other hand, I had no relapses for 9 years and I could forget about having MS. Now I’m being asked to choose between cancer and MS.

                          Comment


                            #14
                            Well that was a scary list of cancers. I am in a clinical trial for Ocrevus that is looking at long term safety but the trial will not go on much longer. I am older than 55 now and have been relapse free since the Ocrevus. Some new sx started this summer and when I see neuro in the fall I´ll ask.

                            For me, PML scares me more than cancer.

                            It looks like mavenclad will get the FDA stamp of approval in the US sometime soon. Then I´ll have to do another round of research.

                            When the clinical trial is over for Ocrevus, I can access what my personal B cell levels were and hopefully I´m someone who could spread out the infusions over time even more than the 6 months. There is considerable variety in how fast the B cell population rebounds and that likely influences the cancer risk if you are a slow to repopulate and get another round of Ocrevus that knocks your immune system down. I think they should tailor the frequency to one´s personal rebound rate.

                            Comment


                              #15
                              Well now I'm hmmm

                              So I knew about the breast cancer and my Neruo sent me for a mammogram. I have been slow to follow through but after reading this thread..emailed my doc for her to schedule it and a brca test.
                              I'm freaking out PROMISE. My Aunt died of IBC I believe it was called. She died in about a yr of dx. I lost my gpa the same yr 2 months later. That was father and daughter. My Great gma had breast cancer, 2nd cuz had breast, then stomach and uterine, 2nd cuz had Lymphoma, my gma has had at least 2 of the skin cancers as has my dad and gpa on the side. All that other cancer was on my mom sides of the family.

                              So in short...BRCA and mammogram lol.

                              not stressed or over worried, just makes me think to be more watchful.

                              Allyson
                              DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus

                              Comment

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