Wednesday, May 22, 2013

NOVARTIS Survey finds that Advanced/Metastatic Breast Cancer Patients Feel Alone

I have to hand it to NOVARTIS....the pharmaceutical company which makes, among other things, Afinator.  They've been working at really talking to Advanced/Metastatic breast cancer patients and are actually trying to help.  I know that since it is a pharmaceutical company it is sort of self serving.....but they don't have to do this.  As part of their new initiative, they have started a new website to support advanced/MBC patients and are producing documents and support materials, as well as working to provide opportunities for us to meet and to reach out to others through their "Count us, Know Us, Join Us" campaign.  You can read more about this on their new website,
http://www.advancedbreastcancercommunity.org/

I took their survey which was put out through the Inspire.com website.  I think the survey could have been improved....but I have to give them credit as they are the first to have every ASKED the questions they did..at least in my experience.

Not surprising to those of us in the trenches, they discovered that we do not feel acknowledged or understood by other cancer patients, particularly the newly diagnosed stage 0 - 2.  Take a look at the synopsis the Metastatic Breast Cancer Network made of the report here:

http://mbcnbuzz.wordpress.com/2013/05/22/survey-says-metastatic-breast-cancer-can-be-a-lonely-experience/

It's hard being someone who is on long term chemo.  I have been on treatment for the last three years.....and people drop off the face of the earth....partly because I can't get out, and partly, I think, because they are tired of me. When I am asked how long I m going to be on chemo and I respond, "I don't know,"  they are incredulous.  They don't see me the days that I am bed bound because I am too fatigued to function. They figure that I can handle it....or that my family should be able to handle it...and yet I have issues that I am struggling to attend to....Yes, I can no longer garden like I did...but I want some help in destroying beds..but that's too hard.

Novartis is to be commended for this.  Hopefully, it will make a difference.  Their standard response is "You are not alone on this journey."  I have to say, that it is a much more positive response than when I was first diagnosed.

Take a look here for more interesting information on the different responses from different countries.

http://www.advancedbreastcancercommunity.org/countus/2013-global-survey.html

The www.advancedbreastscancercommunity.org website is as full of information as the website name is long.

I'm looking forward to seeing what other companies will do, and what else Novartis will undertake.

In the meantime....I'm going to bed...again.


11 comments:

  1. Thank you for sharing these links and your thoughts Lisa. I'm so glad Katherine tweeted your post, and I'm very glad to have found your blog again. Last fall I found comfort in your words, and in the length of time you have been living with stage IV breast cancer.

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    1. Thank you, Carolyn, I always feel bad when I don't post as much....I usually do it in the evening, and lately, I've just been too tired.

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  2. dear lisa,

    wonderful post, giving acknowledgment and hope for METS patients. even though so many people around you don't get it - the fatigue, on-going and indefinite chemo, et. al. - your friends here will always be by your side, cheering you on and thinking of you, and so thankful that they, too, know they are not alone when they ready your blog. i wish so much i could come right over and help with your gardening, or whatever i could do to ease your way. i hope you feel the cyber hugs i am sending you.

    love, XOXO,

    karen, TC

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    1. Thanks Karen! If you came over, you'd leave with tons of plants!

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  3. Hi Lisa and all, I am at a place of needing a few questions - mainly cancer care by medical field - answered. I am starting to wonder and question the complete interest in my situation by the medical field. Questions are not completely answered and there are concerns of where to go now. I was on faslodex from 10/2011 through 12/2012 and was doing well, then I began with swelling in the hip/buttock muscles and constant pain in the sciatic nerve. I asked to be removed from faslodex because I was no longer walking and in constant pain. The other two meds recommended were afinitor and xeloda. On Afinitor Blood counts and liver and kidney functions failed. the cancer reactivated, meaning the "stable numbers on the petscan" began rising. Now I am to begin xeloda and concerned. Faslodex kept the cancer "quiet" but I could not walk. I also had 2 major surgeries in 2012. do I choose quality of life - no mobility. Hopefully Xeloda will work in my system as well as faslodex. I tried to control the pain and muscle swelling including PT care. Has anyone else experienced this. I have had cancer as my companion since 2005 metastatic in 2010

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    1. I don't think that the "medical field" has failed you, but your particular doctor may have. I would strongly urge you to get a second opinion. You didn't mention what scans or tests were done to determine that Faslodex was working for you, but swelling and pain and inability to walk doesn't indicate anything good...but it may be something other than cancer. I assume
      by blood counts, you mean tumor markers? Certainly "liver and kidney functions" failing doesn't sound good...get a second opinion right away and have someone explain where you are, with someone else with you to hear and understand, because it sounds like Faslodex failed you a long time ago. You can do better than "keeping the cancer quiet."

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  4. Thank you for your answer, I have an appointment for a second opinion in the next couple of weeks. I am wondering if anyone else has had weakness in the legs, swelling in the buttock muscle and sciatic pain while receiving Faslodex.
    The PET scans taken at 3 month intervals while on faslodex showed the tumors were stable, not growing and there were no new areas of cancer growth.

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    1. all of those problems are listed as side effects of Faslodex. Faslodex always gave me swelling until I was told to stand on the opposite led from which I was getting the injection. If I didn't, I would get a hard, hot, lump. Some people get it while laying down. It is also helpful if the injection is given very slowly and if it is at room temperature. You can see the list of side effects here:
      http://www.drugs.com/pro/faslodex.html

      Aesthenia or Asthenia is the medical term for muscle weakness, your sciatica may be the joint/back/muscle pain...or you may also have sciatica unrelated to cancer....we tend to forget we have bodies which contnue to have issues unrelated. I also wrote about faslodex here:
      http://michigoose-longtermbcsurvivor.blogspot.com/2013/03/faslodex-additional-thoughts.html

      http://michigoose-longtermbcsurvivor.blogspot.com/2010/07/bottoms-up-faslodex.html

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  5. Thank you for sharing these links. i have found myself a new community of breast cancer fighters. I anvocate for breast cancer is Africa where there is almost ZERO awareness.
    Any help, even technical will be highly appreciated

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  7. Cured of TNBC!
    I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on aletedwin@gmail.com and also for any related cancer illness don't be shy just speak to her today.

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