Hormonal Treatment for Stage IV
Comments
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Does anyone know if a grade 3 tumour is less likely to respond to AI treatment than a lower grade tumour?
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Hi Beancounter and welcome!
Nanapat, I don't think high or low grade makes any difference. The AI's starve the tumor cells by stopping our bodies from producing the estrogen and progesterone so they cannot reproduce and hopefully die so the response should be a good one no matter what the grade.
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Thanks, that makes sense
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Hello All
I am a newly diagnosed Stage 4 with a bone met. I already have Fibromyalgia so I have joint pain all the time. I am apprehensive about Femara because I see all the posts about the joint pain that it causes, and add that to what I have, I would not be able to work because of the constant pain! Is there a different medication that would be as good without the SE's? I will also have Zometa, which I have heard can make you feel like you were hit by a Mac truck after the first dose.
Thank you.
Amy
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MzMerz,
All three of the AI's [aromasin, armidex, femara] have the possible side effect of joint pain. However, that doesn't mean YOU will have joint pain beyond what you already live with. I was on aromasin and didn't have joint pain at all, though I had severe bone pain. The best plan of action, in my opinion, is to try the femara and if at three months you are experiencing increased pain, switch to another one. Lots of people have switched until they find the one that works best for them.
Compared to a chemo, these AI's are pretty low impact on your quality of life and worth trying to use.
Hope this helps,
*susan*
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Hi! I relatively new to the list. My wife has been for about two months on FEMARA and ZOMETA. She was diagnosed last August with extensive liver mets, peritoneal lymph node mets and spinal mets (small but there they are). She had 18 weekly administrations aof Taxol which reduced the liver tumor burden by 80%. After that our onc suggested we switch to a hormonal as the tumor is strongly ER/PR positive (95 and 90 respectively). Plus she is HER2 neg. This week we gained access to AFINITOR. Initial diagnosis 12 years ago.
Could you please provide feedback with regard to FEMERA efficiency? Any reported long runs?
Many thanks, Grigoris.
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Hello and thanks for the info and warm welcome.
Just an update that i have completed the radiation to the met site behind my eyes. I had 25 treatments and very little discomfort. Also I have been on Femara for 2 months now and have had zero side effects except for an occasional hotflash. The only changes I've made dietwise are no sugar and I added 3 1000 mg packets of lypo-spheric vitamin c per day.
warm wishes to all of you!
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pampam - you must be relieved to be finished rads - so glad that you had little discomfort. Hoping that the Femara continues to treat you well with little or no SEs
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Grigori, For each person the length of time we get can from the AI's can differ hugely! I am using Femara at the moment and have been on it for 15 months. It has treated me kindly (very little side effects). My doc at my last scans found some extremely small progession in a few of my bones but they were so small they could not be measured so I'm staying on the Femara until my next bone scheduled bone scan next January. The best advice for any of the AI's is, if they are giving your wife a hard time as in too many really bad side effects that make her life a misery, please remember that she can always ask to be put on one of the others as there are three, Arimidex, Femara and Aromasin.
Good luck.
Love n hugs. Chrissy
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Grigori, I have been on Femera for almost 2 1/2 years and have had some regression early on and have been stable now for about the past year. It has been very good to me - mild SE's such as joint pain. I lead a pretty normal life - work fulltime, still play tennis and golf, and do whatever I want. Most people who did not know me at the time of my diagnosis have no idea I live with cancer.
My cancer also was very high er/pr+ (90+) and her2-, it had also spread to my liver & bones.
Good luck
Jill
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Girgori - I have been on Femara since July of 2010 and had very good results and few SEs, hotflashes and joint pain. I had mets to bones, liver, and lungs. The liver is almost completely healed, lungs are about 75% clearer and bones have such minor progression that I am considered stable for now. Like Jill people that did not know me before my dx do not know that I live with cancer and those that do know are amazed at how well I look and am doing. Because of the severity of the initial bone mets combined with RA I am also on a pain management program as well as Aredia IV treatment every 4 weeks. Hope this helps. The AIs are worth a try as they work so well for so many and with so few SEs.
Good luck to you and your wife.
AJ
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I see that most folk seem to be on AI's and I'm assuming it's either 1) Because of age / menopausal status or 2) They blew through Tamoxifen first.
I started Tamoxifen in December just after my 50th birthday and am strongly er/pr+. Just wondering - anyone out there had a good run with Tamoxifen?
Laurie x
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Laurie, when I was first dx'd I was prescribed Tamoxifen but I had a really bad allergic reaction to it that put me in hospital then this time around I was first px Arimadex but that gave me such bad SE's and a very small progression that my doc changed me to Femara after 15mths. Now I have been on this for about eighteen months and again I am showing some progression but they are so small and I get nery few SE's that I'm staying on it until next January at least.
I have heard that some of the older women taking Tamoxifen have had very good results from it. I think it just depends on the treating doctor as to what drug he/she starts with.
Good luck with your nd I hope you get a really good run with it!
Love n hugs. Chrissy
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Laurie, this woman had a Tamoxifen run of 17 years with mets.
http://mbcn.org/get-involved/details/my-story-rita-arditti/
She was about 48 at the time she started taking it but had had her ovaries removed earlier.
Grigori, I have been on Femara 4 years now and also in remission 4 years.
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Chrissy & Heidi
How long after you started femara did you have your first scan? I'm wondering if my doc is scanning me too soon thus switching me too soon.0 -
It could have been six months, but I don't recall anymore. Will try to look up my records. I had 28 radiation zaps though in between to all affected sites despite being NED. That probably would justify not scanning sooner.
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Laurie - I was put on Tamoxifen after my treatment for Stage 3A and it worked for 3 years before I developed mets. Arimidex was next but it only worked for about 8 months, then Faslodex for about 6 months. It's not really a good comparison since I had chemo before Tamoxifen, but I still think of it as my most successful anti-hormonal.
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Frapp, my doc did my first scan at six months then again nine months after that one and he plans another at twelve months after the last unles I feel some major new symptoms. At the moment I'm doing okay without new symptoms so it will be January next year for mine. I know some doc have a tendancy to want to scan early and a lot rely on the blood tests as well but mostly they rely on us knowing our bodies and how we feel. If you think he is not giving the Femara long enough to work ask him why he feels it neccessary to scan so quickly. You can always tell him you would rather wait a little longer as well.
Love n hugs. Chrissy
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I was on femara once before but declared as having progression because uptake had increased on pet scan that was taken after two mos. Now on it again with trial drug. Hoping if trial drug doesn't work that maybe I can just stay on femara for a while. No se with this drug.
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Frapp I'm taking this as being progression in the bones.....yes? If it was, my understanding of the AI's and bones mets is that they will take up more of the nuclear isotope but that is normal as the bone takes a while to regrow and if it was only two months for you and if it was in the bone then the bone would not have had enough time to regenerate so showing a greater uptake.
However, good luck on this trial you are on and I hope that it works well for you.
Love n hugs. Chrissy
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Thanks for the info. I may insist on giving more time if they try to change meds without a bigger progression.
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Mods, once drawback to your now combining the "stickies" is that a reader can no longer determine with one glance if anything has been added to a particular thread within the group. Also, once a reader clicks on said thread of interest, she has to toggle through multiple pages from "first" to "last" to see if anything has been added.
Tina
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Tina,
It appears that it is only the first time you open this redirected thread that you need to "go to the last page." I think I will just have to add this thread to my favorites to see if new posts have been made. The ID of this thread has not changed, but for some reason, my cookies didn't know where my last viewing was.
Guess there were too many stickies with the recent additions.
*susan*
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Thanks, Susan. Now, if you would be so kind, you can explain to me how to add threads to "my favorites." I'm sure it's absurdly simple to create a list of "favorites," but I've tried to figure it out for the last five minutes and I have a low level of frustration tolerance!
Ms. Impatience
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Cruise up to the top of this page, and select "Add to My Favorite Topics." Then to access your favorites, select the tab labeled "My Home" and your favorites are waiting for you.
Hope this helps,
*susan*
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Susan,
D'oh!
Thanks!
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How did this come unstuck? Was it a mistake? Can it go back? Never mind... I have figured it out.
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Any one taking Aromasin? I did Femara for 2 1/2 years then had progression to new bone and liver so did chemo for 14 months then stable and did Tamoxifen for 6+ months then progression now Aromasin. I have a fine raised rash on my torso, chest,back and it is itchy. I do calamine lotion and Claritin and at night benadryl. it gets worse 2 hours after taking Aromasin at bedtime then is some what better. Has anyone had a rash with this drug? I talked to my pharmacist and he said a skin rash with itching can ocurr as long as it is not hives. Showed it to my oncology nurse too. I have been on Aromasin for a month now and it started around day 8-10 of taking the drug. Any suggestions? Thanks Dawn. I also have bone and joint pain.
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Is anyone on both Femara and Tamoxifen? Or 2 other AI's? Today I found out I have progression in a lymph node near the heart. I've never had chemo. I have been on Femara for 3 years and NED for almost that long. The original spots show no progression - just this little offshoot. Since the Femara seems to be still working on the original areas, my oncologist is adding Tamoxifen in hopes that the new tumor will respond to a slightly different drug. He's calling the new tumor a "clone."
Thanks for any feedback!
Lane
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My onc just added Faslodex to Aromosin. I was on Femara for a little over 2 1/2 years but the tumor in my breast grew back and a spot on my rib started to light up so we moved to Aromasin in December. However, my markers keep rising ( mine are very accurate) but still show stability on scans so just yesterday, we decided to add Faslodex. We shall see how my markers do the next few months. I am also up for scans end of May.
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