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Update January 2018

Hello there,

Wanted to give an update. Results of pet scan came back, talked with the doc. I have several cancer spots on my spine. It appears that many of them are decreasing. There are two areas that the doc is closely watching. One area she said is 'mixed', they know it is changing but don't know 'how' yet. The other area is on my 7th rib, where for some reason it appears to have increased some (compared to the last scan). She wants another pet scan done in about 3 or 4 months. Meanwhile, as long as my body is not having adverse side effects, she wants me to stay on treatment (ibrance/femara). If these areas are not decreasing, she wants to do something else like radiation therapy to target those spots. She said she is encouraged to see some of the spots decreasing or disappearing. This is my latest news, hope everyone is doing good. We will hang in there and pray for each other.

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Overall sounds like you are going on the right direction! Are you adding other supplements like artesiminin or anti fungus stuff? Best of success w the next scan!

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Susieim. Glad to know at least some was good news. Mine is Monday. My Oncologist warmed me to read the specifics of Ibrance. Average time given is 8 to 16 months for stopping progression. I know some people get a lot more. I'm happy for them. I hope to get at least another year with my husband.

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Good news, Susie! I was diagnosed in mid-November with mets to my spine and have had 10 rad treatments, along with the same Ibrance/letrozole combo. Will have a pet scan next month to see any changes. How long have you been on the hormone drugs and any side effects? Prayers for your continued zapping of those mets!!

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I have been on Femara since August 2017. Yes thank you for prayers about zapping the mets, prayers are good.

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SeattleMom,

Hi. What factors determined that you have radiation to the mets in your spine?

I, too, have bone mets to my spine, ribs, and pelvis and at no time was it suggested that I have radiation to these areas. I was put on various drugs which ran their course over time, and now am on the Ibrance/Letrozole combo like you.

I did see a Radiologist when I was first diagnosed with the bone mets in Oct. 2014, and he didn’t feel that radiation was the way to go at that time. He said that I was on a good course with the meds and it’s my understanding that if there were specific areas in my bones that really hurt and wouldn’t go away, then radiation would be considered. He just didn’t recommend it. (I had already had 33 radiation treatments on my left breast where my lumpectomy was performed.)

I’ve read many posts on this site where women have received radiation for their bone mets and I don’t understand why it’s not for me. For some reason I think it’s to prevent being exposed to too much radiation.

I’m currently getting Zometa infusions which have helped tremendously. My pain level went way down over these last 3 years. I take Ibuprophen, 400 mgs when needed and also Oxycodone if I have to, but overall I rarely take it.

I use a heating pad on my lower back when sitting in my chair when watching tv, and sometimes in bed, but that’s it.

Has your bone pain disappeared from the radiated areas? Was that the purpose of having this done? Or was the purpose to try to totally eradicate the bone mets? I’m wondering if that’s possible? Maybe I have too many to be eradicated?

I’m going to discuss this matter with my Oncologist.

Cat scans have shown that the progression of the bone mets has stopped.

Are you on any bone strengthening regime like Zometa or Xgeva? These drugs are supposed to aid in supressing progression of bone mets.

Would love to hear from you again and how you’re progressing. Have you just been diagnosed with MBC since November? That’s barely 2 months. I think time for the meds to take effect is also important.

Thanks for any input. Wishing you well! Kats2

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Thank you for sharing, you have brought up some good points. I was first diagnosed in 2012, received 6 weeks radiation treatments and 8 traditional chemo treatments (early stage 3 breast cancer at that time). In 2012, doc felt the cancer was gotten rid of. Then I started to feel back pain last year 2017. Eventually, after tests, it was discovered that the breast cancer traveled to the spine (stage iv breast cancer). july 28 had extensive back surgery to remove a cancerous tumor. After the pet scan, they saw that I had several cancer spots on my spine. Started on Femara in August. When I recovered some from back surgery, had 10 radiation treatments. Then they started me on Ibrance/with my staying on Femara. I am on my 4th cycle of Ibrance. The second pet scan was done last week, which shows some of the cancer has decreased but there are two areas that have not. Doc said she might suggestion radiation to the targeted areas, IF they don't decrease, to perhaps extend my life (she didn't say that but that is my thought). I think she is thinking radiation, if the ibrance treatment is not effective, in making the areas decrease in size. Yes, I started to take Zometa also. So I hope and pray, that my body will remain strong with this treatment, and that the treatment will be effective in stopping the progression of cancer. My next scan will be done in 3-4 months.

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SusieIM,

Thanks for filling me in about your history. I had forgotten that I could read about others on their bio page if they wrote anything, which you did.

I’ll leave you and others in our situation with a sentence that was told to me by a Dana Farber Oncologist that I consulted in 2015. She said, “ You don’t die from bone mets.”

On that note, I’ll say good-night. Wishing you and all of us courage, faith, and peace. Kats2

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Thank you Kats2

good night, we will keep in touch.

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I use a heating pad too when sitting and at times in bed. I have some discomfort in my lower back, but it is not severe. I was at first diagnosed with early stage 3 breast cancer 2012, followed by 6 weeks radiation, 8 chemo treatments. They thought it was gotten rid of. I started feeling back pain last year to find out, it was breast cancer that traveled to my spine. Yes, I am taking zometa every four weeks, on femara/brance (cycle 4).

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Hello, Kats2,

The decision to have radiation oncology to my spine was based on the pain I was experiencing; also one of the lesions was larger than the 2 or 3 others. My guess is that your mets were responding to the Ibrance/letrozole and that it was better to avoid rads if there was no pain involved to your spine.

Yes, my bone pain has, for the most part, disappeared; there is still a little residual ache here and there but mostly much improved. I get a shot of Xgeva once a month to help suppress the spine mets. I have one scheduled for tomorrow.

I would have to say the the most discomfort I have experience so far has been the result of the rads: extreme lethargy and side effect on esophagus, which was likely in "the line of fire." I developed esophagitis which made swallowing difficult and painful and which lasted about two weeks post radiation. So glad that's over.

And yes, I was diagnosed in mid-November, after discovering an enlarged lymph node in my right armpit.

I wish you, well, Kats, and hope that you remain optimistic. All of us need to remain diligent and hopeful! Prayers to you! XO

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Hi SusieIM,

Do you have bone mets only? And are you on Zometa or Xgeva to help with this condition?

I’m happy that some of these bone met areas are disappearing. Very encouraging!

When we’re you first diagnosed with MBC? How long have you been on a Ibrance/Femara combination?

For me, I’m starting my 3rd cycle and it seems to be helping. I’m on the lowest dosage of 75 mgs right now. My bloodwork is below normal but not way off. I’m hoping I can stay on this protocol for a good while.

Thanks for any other info you can share. Best wishes. Kats2

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I have bone mets only. I am on Zometa, ibrance/femara. I was first diagnosed with MBC in August 2017. Started on femara in August. I had 10 radiation treatments followed by starting ibrance. They didn't start me on it right away since, I had back surgery july 28, needed to recover from that first. I am on cycle 4 of ibrance, dosage 125. My bloodwork is a little low but acceptable. Doc is hoping I can stay on same dosage next few months before having another pet scan.

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Sounds positive. I am so glad they keep a close eye on us. Glad you are feeling good. Thanks for the update and I prayer for all of us every night.

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I have been on the Ibrance/Letrozole combination 13 months. Every scan it gets better and no progression. Hang in there. Give the treatment plan more time. Praying that your results get better and better. Xoxo

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SusieIM,

I was wondering if there are any harsh side effects being on 125 mgs of Ibrance.

I’m on lowest dosage of It, 75 mgs. I’m in the middle of my 3rd cycle and so far am doing okay. I do have some slight swelling of my right ankle, though, but I think that’s from the high dose of Afinitor I was on for 4 months before the Ibrance. That caused me lots of swelling in my ankles, legs, and even the lining of my left lung!

My Oncologist wanted to be careful with me when he put me on the Ibrance. I go for bloodwork and doctor appointment next week.

Do you have Ductal BC? When you spoke of the removal of a tumor in your spine, that’s what came to mind.

I have Lobular BC which does not show up as a tumor. It shows itself as hard-to-see threads or scattered beads. That’s one reason, I think, that we’re hard to diagnose. I would be so happy to find out that the Ibrance was working on the lower dosage!

Yes, I think we need to be on the Ibrance for an extended time to see if it’s working. No drug should be stopped too early,

My wish for you is that you’ll respond well to the Ibrance. If it’s causing too many side effects, perhaps your Oncologist can lower the dosage.

Will keep you in my prayers that things will stabilize for you for a long long time. Keep us posted.

Kats2

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Hi, Kats2! Just to let you know that I began to have slight swelling to my left foot, ankle, and calf. Called my oncologist's office, and they immediately had me scheduled for ultrasound of both legs. It ended up with a diagnosis of acute deep vein thrombosis (DVT) and I am now self injecting twice daily with lovenox. You need to be very careful when you notice swelling as DVT indicates blood clots that can break away and lead to pulmonary embolism (sometimes life threatening). Hope that your docs are aware of your swelling! God bless you!

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SeattleMom,

I just had an ultrasound of my left leg last night. Thanks so much for sharing this information with us. I haven’t heard the results yet, but the pain has subsided today in my left calf. It does come and go.

I’m glad I had the procedure done even though my Oncologist didn’t think it was serious. Now my left foot hurts when I put on shoes or boots and walk! Could be a different side effect!

Thanks again and good luck with your treatment. I’m glad your doctor was right on top of the situation. Best wishes, Kats2

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Hi SeattleMom,

Found out that my calf pain was not the result of a blood clot. Thank God!

Now my left arm hurts like crazy. Can’t seem to lift it very high. I just hope I won’t have to go to an Orthopedic doctor. I’ had my share of problems!

I had my 2nd Procrit Shot today to raise my Hematocrit level. The level needs to go up to 10 and right now it’s 9. I’ll see if I can see her tomorrow.

Ok, Bye for now, prayers and blessings to you! Kats2

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Thanks for update, praying for good progress these months! Hang in there and enjoy something fun every day!

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Yes, enjoy life, true. I am looking for work so it will be easier to stop and smell the roses, etc. when I am settled in with work. I will find something but you are right, enjoy the moment I will do that.

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