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LaurenS16
LaurenS16 Member Posts: 57
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

After recurring bouts of pneumonia and severe pleurel effusion I was diagnosed with breast cancer last April. I decided to skip stages I through III and go straight to IV, with mets in my pleural cavity and vertebrae. Currently, I'm being treated with tamoxifen and Xgeva. It seems so strange to have stage IV breast cancer and essentially be treated for it with a pill a day, when others with earlier stage disease are having surgery, radiation, and chemo! 

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2012

    Lauren I hate to say welcome when someone comes here--but---welcome to this world---One thing, there are so many wonderful people with so mich knowledge of this horrible disease Im sure u'll find some comfort and answers to any questions u have. So jump right in and search whatever interest u or u'r puzzled about--there are so many issues to discuss.

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  • camillegal
    camillegal Member Posts: 16,882
    edited September 2012

    Lauren I didn;t mention y sister is stage IV too and she takes a pill and gets a shot every 2 months now--?? no chemo or rads. /so everyone again is different.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited September 2012

    Hi Lauren! Welcome to the boards and date I say it, stage IV. At the moment I am just on a little pill once a day and it's keeping me doing just fine. Hoping you are doing just as well.



    Love n hugs. Chrissy

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  • Mzmerz
    Mzmerz Member Posts: 1,054
    edited September 2012

    Hi Lauren.  Sorry you have to join us in Stage 4 land. You will find lots of information here and on the Stage 4 board.  You will find that most everyone is on a different type of treatment, or has been on this AI, or that chemo, or some people have been on most everything.  I think, no, I know I have learned more things from this board than from my actual doctor.

    take care.

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  • tangodancer
    tangodancer Member Posts: 9
    edited September 2012

    Hi Lauren and Everyone else on this board.  I am English but living in Spain...and very pleased to have found this site!  had a bilateral mastectomy Dec 2010 (one x breast cancer, one x cosmetic) and seemed to be clear, without taking anything, but now I have a diagnosis of metastases in ribs and shoulder blades plus a tumour in the site of the original lymph node removal (14 removed).  Is this Stage IV?  I am really ignorant on the topic having done the ostrich thing and buried my head in the sand...The oncologists here will tell me next week what treatment they recommend.  I was supposed to take Arimidex after my mastectomies but decided not to...

    Anyone got anything to say, other than 'you're an idiot'?

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  • LaurenS16
    LaurenS16 Member Posts: 57
    edited September 2012

    Hi tangodancer,

    You are certainly not an idiot! I knew I had cancer in my lung fluid and my bones, but I still cried the 1st time I heard my doctor say Stage IV. Sometimes I think that ostrich has a good idea.

    Lauren 

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  • LaurenS16
    LaurenS16 Member Posts: 57
    edited September 2012

    Thanks for the welcome ladies. Like the rest of you, it's a club I never wished to join, but I'm glad the members are friendly.

    Lauren 

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  • HLB
    HLB Member Posts: 1,760
    edited September 2012

    Tango, yes, that is stage 4. Dont beat yourself up...  from one idiot to another I refused tamoxifen and now I have spinal mets. Maybe I just don't want to blame myself, but I still think it's a bad drug. I took Maitake D Fraction and bio progesterone. after a few years I stopped taking those things thinking I was in the clear because they are expensive. So maybe they actually were working. Hard to know for sure. Dont worry about the Arimidex. Maybe that is what will you will get this time, and probably a bone agent. I would'nt refuse this time though! I am taking letrozole and XGEVA and started again with the maitake and a bunch of other supplements to help. Let us know how your appt goes> I have one next Wed and very anxious to see if this treatment is working!!

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  • LaurenS16
    LaurenS16 Member Posts: 57
    edited September 2012

    HLB,

    Would you mind sharing what supplements do you take? I'm curious. 

    Lauren 

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  • tangodancer
    tangodancer Member Posts: 9
    edited September 2012

    HLB and Lauren

    Thanks so much, this is already very helpful.  It´s going to be hard to understand everything I´m told here because of language difficulties, so I´m glad to have info and support. And return the favour if I can.   I will come back next week with an update...tomorrow we´re going to go off into the mountains (walking) and get ourselves prepared for the battle!

    Cool

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  • HLB
    HLB Member Posts: 1,760
    edited September 2012

    Hi Lauren, I am taking generic Femara once a day, XGEVA shot once a month which is like fosamax for the bones but I think its a lot stronfer, and Effexor 75 for hot flashes. Here are the supplements:



    Maitake D Fraction Pro 4X 30 drops/day. I put it in coffee and it doesn't taste bad at all. Just adds to the coffee flavor.



    Turmeric 1800 mg/day. It has something in with it that I forget the name of that's derived from black pepper which makes it easier to absorb



    Calcium 600/day (they told me this is a must with XGEVA)



    Vit D3 10500 iu/day



    Vit C 2000 mg/day (should take a lot more maybe will up it)



    Magnesium 250mg/day



    Boswellia 1200mg/day for joint pain and might help prevent brain mets.



    Asprin 81mg/day



    I was just reading about modified citrus pectin and sounds very promising for preventing or slowing down mets so I'm going to get some of that. A lot of ladies take DIM which I still need to look into.



    I hope that was helpful. The ones I have the most faith in and are really important to me are the maitake and turmeric. I suppose time will tell. I may double the turmeric. If you're interested in supplements and alternative/complimentary in general check out those two sections on this site. Lots of people doing different things with a lot of info on it. I wish you well at your next appt and hope you get a good tx to put those mets right back to sleep!

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  • HLB
    HLB Member Posts: 1,760
    edited September 2012

    I also get on as many prayer lists as I can! Lots of friends and esp my parents friends are all praying. One of them got me on the Joel Olstein prayer list. My mom wrote a letter to greg Anderson. We met him a few times when he lived here and he sent me a book and a card that he is praying.he's the founder of Cancer Recovery Foundation and they help people with cancer and give gift bags to kids with cancer. Very nice man and inspirational. He was given 30 days to live from lung cancer 25 years ago!

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  • LaurenS16
    LaurenS16 Member Posts: 57
    edited September 2012

    I'm taking the tumeric, calcium, vitamin D3, and magnesium, plus fish oil for triglycerides and inflammation, glucosamine / chondrotin for my arthritis, and a combination of vitamin E, B6, and folic acid for hot flashes. I recently added a turkey tail mushroom supplement. I was just wondering what other suplements I might want to look into. It already feels like I'm swallowing a ton of pills each day.

    I agree with you on the prayer lists. My friends, family, and church are praying, as are many of the family's friends and churches, plus a few of my Catholic friends have put me on the prayer list a various Catholic institutions. I've got prayers going up from all over the US, plus lots of places overseas. Actually, prayer is one of the things that kept me sane when I was 1st in the hospital with this. I decided I'd go crazy if I thought about it too much, so I decided instead to pray for each person I met at the hospital -- nurses, doctors, the people who brought the meals, visitors, other patients, etc. 

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  • HLB
    HLB Member Posts: 1,760
    edited September 2012

    Good idea to think of others when you're thinking too much. I think about it constantly. I don't know how long it takes to stop. I want to just stop it but I can't help it. I feel the same way about the pills. I try to keep it to the most important ones but they're all important! I did get some triple strenth turmeric with 900 mg per pill so that cut down on the pills a little bit. I got some vit c powder to put in smoothies so I could cut down in that way but the powder makes the smoothies really really tart.

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  • tangodancer
    tangodancer Member Posts: 9
    edited September 2012

    Just seen my very nice Spanish oncologist and the decision is: Faslodex/Fulvestrant for 2 months to see if it slows things down, then move on to Chemo/Rads if it doesn't.  Anyone know about this ERD and its side-effects?

    I don't do prayer but I do have lots of wonderful friends and neighbours, and try to support them in other ways when/where I can, and my partner Steve is just gold-dust!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2012

    Tangodancer and HLB, please stop blaming yourself! I was taking Tamoxifen when my mets were found. None of these drugs are 100%. We just do our best (and live in a culture that has a lot of blame-the-victim in it).

    So welcome to the newbies - we'll help you as much as we can, and I know you'll do the same.

    Leah

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  • HLB
    HLB Member Posts: 1,760
    edited September 2012

    Thanks Leah, the more I read about it the more I think that tamox just delays mets. Maybe that is a good thing, maybe not, idk. I don't think its a good drug. However, if I run out of options I might be able to use it since I didn't the first time.



    Tango, I hope your treatment gets you right back to NED!!

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  • tangodancer
    tangodancer Member Posts: 9
    edited September 2012

    So sorry to be stupid - what is NED?  I have found a couple of lumps at the base of my neck, same side as original mastectomy/lymph nodes so that may be a dire sign too.  Second day with Faslodex and went on a 6 hr/14km hike...a bit tired now but otherwise feeling fine. 

    Thanks so much everyone

    xxx

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  • LaurenS16
    LaurenS16 Member Posts: 57
    edited September 2012

    I'm new to learning all the lingo too, but I'm pretty sure NED is "No Evidence of Disease", the hope of every stage IVer.

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  • tangodancer
    tangodancer Member Posts: 9
    edited September 2012

    Thanks Lauren16, that is a big wish...even if things just stop where they are I'll be happy!  Got an interesting vision problem today, a bit like Predator 'waves' on my peripheral vision, along with a slight headache; an hour on the sofa dozing seems to have resolved the eyesight but not the headache.  Nothing major though.

    Must work out how to add my medical details...

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  • tangodancer
    tangodancer Member Posts: 9
    edited October 2012

    I had my second batch of Faslodex last Wednesday (500mg again) and am feeling amazingly well! The biggest tumour under my arm has shrunk a lot and the smaller ones on the mastectomy scar line are just little tiny pimples now, almost gone.  This seems extraordinary and I know my body will probably build up a resistance to the medication over time, but at the moment I feel very positive.  I guess it reinforces the view that we are all different and our bodies respond differently  to the medications they give us. 

    I am trying to stick to the low carb diet and get some sort of load-bearing exercise every day...even just a walk up the hill or a spot of dancing...so far my weight has not changed in the 5 weeks.  Keeping on keeping on....Smile 

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