Back from oncologist's and I feel better (loooong post)
Here are my treatment options that Kev and I have to discuss and decide on over the next few days:
1. Faslodex, intra-muscularly, 2 times per month for the first 2-3 months and then once a month thereafter. Benefits--this is an estrogen suppressant (my tumor is 95-98% estrogen driven) and blocking out as much estrogen as possible should stop any new tumor growth and stunt the ones already there. Also, the side effects are the same as the Arimidex I have taken for the last 18 months--hot flashes, weight gain.
2. Xeloda, pill form of chemo. This has the same effect as the IV chemo, but is in pill form. You take 8-12 pills daily--I think she said two weeks on, the third week off. However, even though it's pill form, there are some of the same side effects as chemo: nausea, vomiting, constipation, mouth sores and hand-foot syndrome--soreness, redness, peeling skin, neuropathy.
She said, statistically, both are equally effective for breast cancer that has metastasized to bone with the highly estrogen-driven component. She also said, that no matter which treatment we choose, I will be scanned in 3 month intervals to check on progress and that the treatment can be stopped and switched if necessary due to unmanageable side effects.
When I asked her, knowing all that she knows, what would she choose--she leaned toward the Faslodex--mostly because she wanted to keep as much chemo treatment in our arsenal as possible in the event that I need it in the future. I could stay on Faslodex for a very long time if it's working, but the chemo meds have a finite amount of time for use.
One thing I have to take for sure is Zometa to keep my bones strong. I expressed the worry about jaw necrosis (a girl in my support group got this from Zometa), but she said all of this class of drugs have this as a very rare side effect and that out of the 100s of patients she has on this right now, no one has developed this.
So, sorry to be so long-winded, but so much to think about. If anyone has any experience with either of these treatments, I like to hear about it.
Thanks for listening and for being with me in spirit--I really felt you all with your arms wrapped around me.
Hugs, Renee
Comments
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Dear Missrenee,
I am so happy to hear that you feel like you have control back - so very important. And your Onc - wow, so very glad she's in your corner.
You are never far from my heart or my thoughts. You, Kev and your growing family are in my prayers.
Bearhugs,
Sue0 -
It sounds pretty good. I am so glad you like your onco and she gives you choices and answers all of your questions. It sounds like a really positive visit and I was hoping for this outcome. Congrats on finishing your rads, sounds like you also had a short (13) treatments which leaves you open if you would need it in the future.
Glad you could hear all of us routing for you! Good luck with your decision. But they all sound okay!
Hugs,
Carol0 -
A Great Fan Of Hormonal Therapy
I have been on hormonal therapy since ‘99 and find that they do target the cancer with success and less toxicity. This allows years of living with the disease with endless options. Whatever you decide it will be the best choice for you as we all know our own bodies best.
Doris0 -
What an abundance of blessings!grams2jc said:Glad you are feeling better about it all
Hopefully, it will be an easy decision for you, and then you have a plan which always makes us feel so much better.
Sending you positive thoughts and prayers,
Jennifer
Renee, I'm so glad you have a caring oncologist with multiple choices to offer and others waiting in the wings. My onco gives me hugs, too, when I leave and it feels great. I think I could be her mother.
I don't know anything about the first drug, but my husband was on Xeloda for esophageal cancer from July until Christmas. He's currently on a break. He didn't have any of the bad side effects, just a little fatigue. We were very proactive on all the steps recommended to minimize side effects:
1) Saline mouth and throat rinses 3x a day
2)Lotion on hands and feet morning and night
3))Drink LOTS of water
4 Take Vitamin B6 to help prevent neuropathy. As always, check with your own onco about supplements. Ours is very negative about most, but does prescribe this to help with neuropathy and said he could try it to see if it could prevent it.
I'm sure you'll make the right decision. Keep us posted!
Angie
10 -
I am noit on these meds butAngieD said:What an abundance of blessings!
Renee, I'm so glad you have a caring oncologist with multiple choices to offer and others waiting in the wings. My onco gives me hugs, too, when I leave and it feels great. I think I could be her mother.
I don't know anything about the first drug, but my husband was on Xeloda for esophageal cancer from July until Christmas. He's currently on a break. He didn't have any of the bad side effects, just a little fatigue. We were very proactive on all the steps recommended to minimize side effects:
1) Saline mouth and throat rinses 3x a day
2)Lotion on hands and feet morning and night
3))Drink LOTS of water
4 Take Vitamin B6 to help prevent neuropathy. As always, check with your own onco about supplements. Ours is very negative about most, but does prescribe this to help with neuropathy and said he could try it to see if it could prevent it.
I'm sure you'll make the right decision. Keep us posted!
Angie
1
I am noit on these meds but wanted to wish you peace in your decision making.0 -
I'm not on any of those
I'm not on any of those drugs only on Tamoxifen i'm sure you will chose the right plan for you glad you have a great onc.
Live,Laugh and Love Frankie0 -
... getting some power back in yoursea60 said:I'm glad you feel better
I'm glad you feel better about your options. It certainly helps to have a doctor you trust. Hang in there! Praying for you
Hugs,
Sylvia
life -- makes a girl wanna cry! I am so happy for you Miss Renee.
A caring Doctor, and options -- good news! Do you have any clinical
trial data on either option?
I will be keeping you close to my heart and in prayers so that your
choice becomes clear -- with no unnecessary stress or struggles.
Strength, Courage and Hope.
Vicki Sam0 -
Zeloda...VickiSam said:... getting some power back in your
life -- makes a girl wanna cry! I am so happy for you Miss Renee.
A caring Doctor, and options -- good news! Do you have any clinical
trial data on either option?
I will be keeping you close to my heart and in prayers so that your
choice becomes clear -- with no unnecessary stress or struggles.
Strength, Courage and Hope.
Vicki Sam
Renee,
I've been on Zeloda since July, 2011....This drug has been SO VERY KIND TO ME...! Of all my treatments, this has been the " easiest"....virtually no side effects...I started with 3 pills, each 500 mg, total1500 mg morning and night, for a grand total of 3000 mg daily.. taken 10-12 hours apart...I am on it for 7 days and off 7 days...I am now, since Dec.2011, on 2000 mg morning and night...total 4000 mg per day...I take a Zofran with my morning coffee then eat then take the Zeloda...generally around 8:30 AM...if you choose this treatment option, just eat SOMETHING before taking it in the morning...I started with eating a rather large breakfast...yuk, I have a hard time eating that early...evening dose is never a problem, it's always after dinner and I take a Zofran then, also...but I have talked to some who say they don't even bother with the Zofran and have no problem with nausea... now, I just have my coffee, a donut and a glass of milk....no problem...the only "se" I've had is constipation...Miralax takes care of that...my skin is dry....but it's also winter here..no humidity...but I do use AQUAPHOR on my feet after my evening shower..no one has ever told me that Zeloda can cause osteonecrosis of the jaw...but I do know that any bone strengthening drugs can cause that..rarely....Zeloda isn't a bone strengthener..it's a chemo drug...I am not estrogen receptive...I am triple negative...stage IV... my bc came back in my lymph nodes...I have some problem with my right arm, same side as lumpectomy, node removal....not LE....I see my oncologist on Tuesday with labs...I feel certain he will order a PET and CAT scan to see how the Zeloda is working...I dread these visits as we all do....I hope my experience with Zeloda helps...although I do know it can stop working...as any treatment can....this disease is so darned sneaky!
I wish you the best in what ever you choose...
Hugs, Nancy
Hugs, Nancy0 -
You do sound so much betterJean 0609 said:Hi Renee,
I'm glad you feel better after your appointment. Now just take the weekend off to consider all of your options.
Will continue to send positive thoughts & prayers your way.
xoxo,
Jean
You do sound so much better now after getting a plan in place. I know you will do what is best for you, with the guidance of your oncologist.
Hugs, Debby0 -
Nancy--it's the ZometaMAJW said:Zeloda...
Renee,
I've been on Zeloda since July, 2011....This drug has been SO VERY KIND TO ME...! Of all my treatments, this has been the " easiest"....virtually no side effects...I started with 3 pills, each 500 mg, total1500 mg morning and night, for a grand total of 3000 mg daily.. taken 10-12 hours apart...I am on it for 7 days and off 7 days...I am now, since Dec.2011, on 2000 mg morning and night...total 4000 mg per day...I take a Zofran with my morning coffee then eat then take the Zeloda...generally around 8:30 AM...if you choose this treatment option, just eat SOMETHING before taking it in the morning...I started with eating a rather large breakfast...yuk, I have a hard time eating that early...evening dose is never a problem, it's always after dinner and I take a Zofran then, also...but I have talked to some who say they don't even bother with the Zofran and have no problem with nausea... now, I just have my coffee, a donut and a glass of milk....no problem...the only "se" I've had is constipation...Miralax takes care of that...my skin is dry....but it's also winter here..no humidity...but I do use AQUAPHOR on my feet after my evening shower..no one has ever told me that Zeloda can cause osteonecrosis of the jaw...but I do know that any bone strengthening drugs can cause that..rarely....Zeloda isn't a bone strengthener..it's a chemo drug...I am not estrogen receptive...I am triple negative...stage IV... my bc came back in my lymph nodes...I have some problem with my right arm, same side as lumpectomy, node removal....not LE....I see my oncologist on Tuesday with labs...I feel certain he will order a PET and CAT scan to see how the Zeloda is working...I dread these visits as we all do....I hope my experience with Zeloda helps...although I do know it can stop working...as any treatment can....this disease is so darned sneaky!
I wish you the best in what ever you choose...
Hugs, Nancy
Hugs, Nancy
that has osteonecrosis of the jaw as the most serious side effect, not Xeloda. It's good to hear you are doing well on the Xeloda. Do you not have to take a bone strengthening drug? My onc. said I must (maybe due to the strong estrogen component of my bc). I do worry about taking the Zometa, but she said while osteonecrosis is one of the side effects it is very rare and out of the 100s of patients she has on this, no one has developed it.
Your post made me feel a lot better, should I choose the Xeloda--so glad you're having minimal problems.
Hang in there, sister. This disease sucks, but we're stronger and smarter! I hope your scans next week show that the Xeloda is doing it's job, 100%, and you pass with flying colors.
Hugs, Renee0 -
I had one infusion of Zometa in December....by the end of Dec. I was at the oral surgeon to have a tooth extracted...less than two weeks after the infusion i had a loose back molar...due to bone loss....he was very "up" on Zometa....which surprised me...he doesn't think the Zometa caused it but did acknowledge the coincidence....my Oncoligist has suspended any more Zometa until the end of April....I am supposed to have it once a month...again, I see him on Tuesday, so this will be discussed...oh and by the way, when I had the Zometa infusion the chemo nurse had me eat extra strength TUMS to ward off flu like symptoms which can be a side effect of Zometa...I ate 2 then, 2 at lunch, after dinner and at bedtime...she said I could repeat it the next day if needed...I didn't .... I was fine...I have to say, the Zometa infusion was the easiest, for me, that I've ever had...we were in and out in an hour! So carry some tums with you....:)missrenee said:Nancy--it's the Zometa
that has osteonecrosis of the jaw as the most serious side effect, not Xeloda. It's good to hear you are doing well on the Xeloda. Do you not have to take a bone strengthening drug? My onc. said I must (maybe due to the strong estrogen component of my bc). I do worry about taking the Zometa, but she said while osteonecrosis is one of the side effects it is very rare and out of the 100s of patients she has on this, no one has developed it.
Your post made me feel a lot better, should I choose the Xeloda--so glad you're having minimal problems.
Hang in there, sister. This disease sucks, but we're stronger and smarter! I hope your scans next week show that the Xeloda is doing it's job, 100%, and you pass with flying colors.
Hugs, Renee
Hugs, Nancy0 -
Hi Renee,MAJW said:I had one infusion of Zometa in December....by the end of Dec. I was at the oral surgeon to have a tooth extracted...less than two weeks after the infusion i had a loose back molar...due to bone loss....he was very "up" on Zometa....which surprised me...he doesn't think the Zometa caused it but did acknowledge the coincidence....my Oncoligist has suspended any more Zometa until the end of April....I am supposed to have it once a month...again, I see him on Tuesday, so this will be discussed...oh and by the way, when I had the Zometa infusion the chemo nurse had me eat extra strength TUMS to ward off flu like symptoms which can be a side effect of Zometa...I ate 2 then, 2 at lunch, after dinner and at bedtime...she said I could repeat it the next day if needed...I didn't .... I was fine...I have to say, the Zometa infusion was the easiest, for me, that I've ever had...we were in and out in an hour! So carry some tums with you....:)
Hugs, Nancy
I'm so glad you're
Hi Renee,
I'm so glad you're feeling in control again. This disease takes so much from us, it's just that much more difficult when we are not in charge. And your oncologist sounds wonderful, like the one we all want to have.
I did the Xeloda for a little while too, I did the 3000mg morning and evening like Nancy. It was very kind to me also. But I was only on it for a couple of months, it wasn't effective for me. But I'm triple neg and IBC, very different from the estrogen driven bc.
I believe Chen has done the Faslodex, so you might be able to get some information from her.
I believe it was Cypress Cynthia who suggested regular and thorough dental care if you're on the Zometa. And if possible, a good cleaning before starting.
This is one of those times when it would be nice to be able to 'read' the future, then you would know what to do. Whatever you decide, I'm in your corner.
Big warm healing hugs,
Linda0 -
Renee glad to see your confidenceGabe N Abby Mom said:Hi Renee,
I'm so glad you're
Hi Renee,
I'm so glad you're feeling in control again. This disease takes so much from us, it's just that much more difficult when we are not in charge. And your oncologist sounds wonderful, like the one we all want to have.
I did the Xeloda for a little while too, I did the 3000mg morning and evening like Nancy. It was very kind to me also. But I was only on it for a couple of months, it wasn't effective for me. But I'm triple neg and IBC, very different from the estrogen driven bc.
I believe Chen has done the Faslodex, so you might be able to get some information from her.
I believe it was Cypress Cynthia who suggested regular and thorough dental care if you're on the Zometa. And if possible, a good cleaning before starting.
This is one of those times when it would be nice to be able to 'read' the future, then you would know what to do. Whatever you decide, I'm in your corner.
Big warm healing hugs,
Linda
Hi Renee,
Happy to see both you and your oncologist in control and having different options.
Both Zometa and Xgeva have similar side effects, including jaw necrosis. It is recommended that you see your dentist before administrating both of these drugs. If you have had tooth extraction or root canal you have to wait minimum of 6 months before taking any of bi-phosphonates (Zometa) or Xgeva.
Wishing you an easy time with whatever treatment you will choose.
Hugs0 -
You sound so much bettersea60 said:I'm glad you feel better
I'm glad you feel better about your options. It certainly helps to have a doctor you trust. Hang in there! Praying for you
Hugs,
Sylvia
You sound so much better Renee and empowered now! Good for you! I am always praying for you.
Hugs, Leeza0
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