Hello

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Hello

by gobarb26 on Tue Feb 06, 2018 04:08 AM

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Hi all.  I haven't been on these boards for about a year or so. I decided to re-join because I had a scare in December.  I went to my Oncologist at Moffitt Cancer Center for my 2 month bloodwork and Zometa treatment.  My urine test showed that there was a spike in 2 of 3 MM markers.  He said that the test is almost always on pointe and it seemed that the MM was back.  I have been in remission since my tandem SCTs back in 2011.  It was quite a shock and made my husband and me finally realize that this could be it.  After doing another urine test, they found that it was a false positive and everything was fine.  I have not been on any chemo maintenance for 4 years. The only thing that I get is the Zometa for my bones.  I am wondering how many others are not doing any chemo maintenance and if not, for how long?  They call me a miracle but I am not sure if this is really rare or not.  I would appreciate any feedback on this.  Thanks. 

RE: Hello

by mazz444 on Wed Feb 14, 2018 02:02 PM

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Hi there . . . I had my SCT in 2010, and have been on revlimid every since.  I don't have any side effects on the revlimid, so they've just kept me on it as it seems to be working well! I've had no increase in my m-spike for 8 years, however now it seems to be creeping up.  I just had a BM biopsy and am waiting for the results, but I'm in the middle of my "scare" right now. They took enough stem cells the first time for me to do another one, but who knows if it would work as well as the first.  I'm SO happy for you that your test results came back well! The doctor has been SO pleased that my MM has been under control for 8 years . . I just hope this isn't the start of something again!

Best of luck to you! :)

RE: Hello

by gobarb26 on Wed Feb 14, 2018 05:47 PM

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Hi.  So glad that you had good results with the Rev.  Hopefully, you will get good news from your BM biopsy.  I understand your scare completly!  It is not fun to have to wait for results...If however the results are not what you hope to hear, at least you can do another SCT.  At least that will buy you more time!  Praying for you!   ??  Keep us informed!

Barb

RE: Hello

by DAleinad on Thu Feb 15, 2018 06:14 AM

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On Feb 14, 2018 5:47 PM gobarb26 wrote:

Hi.  So glad that you had good results with the Rev.  Hopefully, you will get good news from your BM biopsy.  I understand your scare completly!  It is not fun to have to wait for results...If however the results are not what you hope to hear, at least you can do another SCT.  At least that will buy you more time!  Praying for you!   ??  Keep us informed!

Barb

Hi Barb, I joined the CancerCompass just today (2/14/18). I was diagnosed with MM in 2011 and I lived in hell through 2012. It's a long story but I'm happy to report that I'm now doing VERY well. Before I did my SCT in July of 2012, I was able to collect enough stem cells to do 6 more transplants. Not that I ever want to do that again.

Anyway, I have been in full remission since September of 2012 and the last chemo I did was right before my SCT. With the exception of pain killers for bone pain, I wouldn't agree to the recommended Tandem SCT or "maintenance" chemo or even Zometa. I did this all against the doctors' strong recommendations to do much more.  At this point, I've been drug free (no pain meds) for 4 years and chemo free for 5 and a half years and I’m doing great!

I’ve learned so much through my MM journey. After my diagnoses, I changed my eating habits substantially. I’ve also done immune system drips (boosters) in Southern CA. I’ve done two in the last 5 years. The drips are easy and you don’t get sick and your hair doesn’t fall out. They do wonders for my blood work too. I’ve actually done most everything against doctor’s orders. They don’t like it but I’m ok with that and I still go to them for blood work every 4 months to see if the MM is returning. I feel very confident it won’t :-)

Maybe you’ve considered alternative treatments to try and keep your cancer from returning. I know there are many natural things you can try so hopefully you have already taken some action on that front. Here’s an example. Have you ever seen the video clip at this link?https://youtu.be/wrbS3t2sfZYIt’s about an hour long and very informative. If you watch it and would like to discuss this or any other alternatives, let me know and I’d be more than willing to exchange ideas.

All the best,

Dan A

RE: Hello

by thunderstrike25 on Sun Mar 11, 2018 12:30 AM

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hey what have they said??? to you? what things are you taking??? vits? meds etc??? 

RE: Hello

by DAleinad on Sun Mar 11, 2018 04:02 AM

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On Mar 11, 2018 12:30 AM thunderstrike25 wrote:

hey what have they said??? to you? what things are you taking??? vits? meds etc??? 

thunderstrike25, who are you posing these questions too?

RE: Hello

by gobarb26 on Mon Mar 12, 2018 05:01 PM

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All the best to you!

RE: Hello

by gobarb26 on Mon Mar 12, 2018 05:44 PM

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I am taking things like Vit. D, Acyclovir, Neurontin, things for helping me sleep and for my depression disorder.

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