Introducing myself

[summeratty]

Hi. My name is Christina. At age 41 I was diagnosed with stage 4 breast cancer, ER positive. I had Mets to my liver and bones. A year after chemo, I had a recurrence to my rib and cervical spine. We treated that with radiation and with some holistic therapy. Have been NED since then. Recently I tried IBRANCE but I had terrible side effects and quit after 3 months.

[Partia]

Nice to meet you. I am fairly new on this board. So you were initially diagosed Stage 4? How are you coming along? Are you happy with your doctor?

[summeratty in reply to Partia]

Hi. Nice to meet you too. Yes, I was stage 4 at initial diagnosis. I'm doing really well! I don't like the doctor I have currently, and I am actually transferring care to a new doctor in a couple of weeks. Fortunately, while I was in active treatment, chemo radiation, I was in Columbia South Carolina, I absolutely loved my doctor there as well as his staff! His name is Scott Sommers.

I was lucky with chemo because I was very responsive to the treatment. I hope yours is going as well as possible.

[Hidden]

Hello Summeratty,

Welcome to the site. I have MBC Stage IV liver and bone mets to spine. I am currently on Taxol (18 sessions, 12 to go).

I'm happy to hear you are now NED. I hope your health continues to improve.

Best wishes for 2017

Patricia 1517

[summeratty in reply to Hidden]

Thanks Patricia! I hope your treatment is successful!

[daf10]

Welcome aboard and congratulations on bring NED Please feel free to contact us when you feel down. As for Ibrance thee are other drugs on the market which might be just as helpful. Talk to your oncologist or go to Metastatic Breast cancer Alliance: mbcalliance.org/ They have a search engine with information about clinical trails

[My2greyhounds]

What holistic treatments did you use?

[summeratty in reply to My2greyhounds]

Hi. High doses of vitamin C Through an IV.

[Rhwright12 in reply to summeratty]

Did u get the vitamin C through your regular doctor or a holistic doctor?

[Rhwright12 in reply to Rhwright12]

And how many treatments did u have?

[Susia59]

I too am a mets patient but feel dumb because I don't know what NED means, can you tell me please.

[summeratty in reply to Susia59]

Never feel that way! there's so much cancer terminology to learn. I certainly don't know most of it. But now you have a new one!

[Halfpint2 in reply to Susia59]

NED means No evidence of disease. I had no idea what that meant either until I started this Mets journey in Jan. 2015.

[suzesunshine]

No worries. Don't feel dumb. I didn't either. It means No Evidence of Disease! Yay!!

[Susia59 in reply to suzesunshine]

Thank you for letting me know that.

[Kats3]

Hi. I too have mets to the bones. Could you tell me what type of holistic therapy you had? I also am ER+ but never had chemo or radiation. I'm currently on oral chemo pills, Xeloda. So far I've been doing well on them. My Oncologist mentioned Ibrance as another medication should the Xeloda stop working which I hope won't be for a very long time. I'm hoping to have NED status one day too! Good luck to you in the future! Kats3

[summeratty in reply to Kats3]

I use a number of holistic Therapies. The rib tumor I had initial diagnosis but it went away after chemo. When it returned, at the same time as the cervical tumor, the doctor wanted to radiate both areas. I am very opposed to radiation. So I decided to radiate the cervical area because it was so dangerous and do a holistic therapy for the rib tumor. It had fractured before I was diagnosed from the unknown tumor so I already knew what that would be like and was comfortable experimenting a bit with that one. I did IV high doses of vitamin C. At my next set of scans the tumor was gone and as of yet has not returned.

I also use frankincense essential oil, metformin which is a prescription drug for diabetes but is known to impede cancer, LDN (low dose naltrexone), and tagamet. Those drugs are all prescribed by an integrative medicine doctor I see in addition to my oncologist. I have just started these newer prescription drugs about 2 months ago.

I also get xgeva shots for my bones and take femara. My oncologist had stopped the xgeva for a while because I was doing well and that's when I had the bone Mets return.

[Kats3 in reply to summeratty]

Does your Oncologist approve of your alternative treatments? I've heard of IV doses of Vitamin C being given and also the Metformin. Where do you put the frankinsense oil? Nice that you found an integrative medicine doctor! Did you have to look hard to find one?

I'm going to ask my doctor if I can do some of what you're doing. Thanks for sharing! Kats3

[summeratty in reply to Kats3]

My oncologist does not approve because he doesn't believe any of it is effective, BUT he agrees it won't hurt me or prevent my conventional therapy from working. I think it's very important to make the oncologist answer that last question because I don't care what he believes as to the efficacy of the alternative therapies. I figure it's my money to waste (if that's what happens), right?

I was very blessed in that I was already close friends with a medical doctor when I was diagnosed. She was, at that time, just beginning to explore integrative medicine. I called her after my first chemo and told her I was never doing that again! LOL She said, "Well, let me talk to you about some alternatives." I did finish chemotherapy, but I also began using the essential oils at that time. I put frankincense on the soles of my feet (where it absorbs quickly), and on the spot where I had the cervical tumor (because that freaked me out!).

She, Dr. Rachel Hall, is in Columbia, SC where I lived at the time. I have now moved to the Charleston area, and there is a popular integrative medicine practice here that I go to now. If you need help finding a doctor, please let me know your area and I'll ask for some recommendations for you.

[summeratty in reply to Kats3]

Best of luck with your treatment. I hope you reach NED status as well! And stay there.

[My2greyhounds]

Hi Christina . Glad you are doing well. I am very interested in holistic therapies in addition to conventional therapy. I just feel overwhelmed by the amount of info out there. My oncologist is great but she's all about science and doesn't Seem to believe much in alternative therapies. Where did you find your integrative med Doctor? Thanks.

[summeratty in reply to My2greyhounds]

Hi! I love greyhounds by the way. My best friend has 2.

My oncologist does not approve because he doesn't believe any of it is effective, BUT he agrees it won't hurt me or prevent my conventional therapy from working. I think it's very important to make the oncologist answer that last question because I don't care what he believes as to the efficacy of the alternative therapies. I figure it's my money to waste (if that's what happens), right?

The information is very, very overwhelming and the fight between conventional and alternative is exhausting. Sometimes, I get very angry. How I am supposed to make decisions about my care when I have no medical training and the "experts" don't agree. Ugh!!! So, I decided that I would do both to some degree. Who knows???

I was very blessed in that I was already close friends with a medical doctor when I was diagnosed. She was, at that time, just beginning to explore integrative medicine. I called her after my first chemo and told her I was never doing that again! LOL She said, "Well, let me talk to you about some alternatives." I did finish chemotherapy, but I also began using the essential oils at that time and since have added the other therapies I mentioned previously.

She, Dr. Rachel Hall, is in Columbia, SC where I lived at the time. I have now moved to the Charleston area, and there is a popular integrative medicine practice here that I go to now -- Center for Occupational and Environmental Medicine, coem.com/Oral_Pathology_Neu...

If you need help finding a doctor, please let me know your area and I'll ask for some recommendations for you.

[Kats3]

Yes, I'd love to meet with an alternative therapy doctor! I live 45 miles from Boston,, MA. The Worcester, MA area would be good for me or the Springfield, MA area also. Boston is too long a trek for me. If your doctor knows anyone in these areas, that would be great!

I'm like you. I'd like to combine conventional medicine with alternative. I think my doctor would approve as I'm taking different supplements like Milk Thistle for the liver and drinking natural extract mushroom tea. I tell and show my doctor what supplements I'm taking and so far he hasn't said anything negative about them. As long as our supplements don't interfere with our chemo or infusions.

Continued good luck to you! Keep us posted as to your progress. If you have any suggestions for me, I'm all ears! Kats3