Hormonal Treatment for Stage IV
Comments
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Thanks, Chrissy. I was taking boswellia a while back but stopped. I'll give it another try.
Caryn0 -
Caryn, if you find the Boswellia is still not enough, add in Curcumin which is also a natural anti inflamatory. When I have over done things, (dont we all?), thats what I do for a week or so for relief.
Love n hugs. Chrissy
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We are on spring break this week so theoretically I am doing less. I have been walking each day but on a typical teaching day, I'm on my feet the whole time. Hmmmm, need to find a good balance! Will look into the curcumin too! Thanks again.
Caryn0 -
I had terrible leg and joint pain from the Arimidex. and restless leg syndrome. I was on Arimidex for five years and in the three years I was off, the leg pain decreased significantly. What pain was left was due to arthritis. But after three years off, I had the recurrence and DM to the bones. It would have been better for me to put up with the SE and just have stayed on it. I heard that some doctors are recommending 8 years on Arimidex and some advocating lifetime treatment.
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Oh, sorry about that,mag. I am not considering going off it at all as it had kept me NED for a bit over 18 months. It's just that the SE's have only recently developed and while not intolerable,are no fun. My charming brother said, "Maybe it's that you're getting older." True enough and with stage IV bc, getting older is something I really want to do!
Caryn0 -
Hello ladies. This is my first time on this thread. I just found out that my Cancer has spread to my pelvis. I am still in the shocked phase of the diagnoses. I was diagnosed in spring 2009. I had mastectomy that summer followed by chemo (FEC-T) and then radsx25. I have been taking tamoxefin now for about three years.
I have been trying to be all healthy by joining a GYM and doing yoga, zumba and palates. Sorry if I spelled that wrong, my spelling sucks. I was having hip aches since xmas, but just assumed it was age kicking in along with my new workouts...Boy was I wrong. I had a bone scan a couple of weeks ago followed by an xray. My onc called me last Thursday to say it was METS. Ever since then I have been in full panic mode. I had a chest/abdominal CT last week and that came back good. My onc called me yesterday to tell me that. On Thursday I had a port put in.
I have an appointment on Tuesday to get the full plan. When I saw her last week she did say that if the CT scan went well it would most likly be Femera, as well as monthly Pamidronate to build my bones, as well as Zoladex until my ovaries could be removed in a few months. I was also offered a Clincal Trial called Medi-573, which I plan to sign up for. Has anyone else done this Trial?
So I have a million questions and fears. Any words of advice?
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Michelle,
Sorry about your reoccurrence. I'm stage IV from the get go with ibc & bone mets. Some of the drugs they use in Canada are a bit different than what they use in the states, but in the same classification. Due to ibc, I had chemo up front, a year later BMX and have been on Femara & Zometa for the bones for the last 3 years. I'm stable and doing well. They use Zometa or Xgeva here in the states for bone mets. I have spinal bone mets.
They can keep you stable for many years if cancer spread is only in the bones. You will be watched more closely and they can switch meds up if one is not working.
Just want to give you some hope that this is doable. Best wishes on your treatment plan.
Terri
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Thank you Terri, I ned that right now.
I have two kids, my son is 18 and my daughter is 13. I am only thinking of them right now...My goal has always been to be around until they both graduate from university..and become the wonderful adults I know they can be. So often you hear the worst, I need to hear the best. I still havn't told my frineds or mother. My mom lives alone and this is going to kill her. She took it the hardest last time.
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Michele,
This is definitely the most difficult time. Once you get all your treatment plans mapped out you will find the strength to cope with your new reality. You mentioned hip aches. If the pain is from your mets, radiation may help. I have a bone met to my upper femur and had rads x15. I wasn't having pain but the rads have rendered the met inactive. People do get Pamidronate (Aredia) in the States! I had one year of monthly infusions and now get it every three months. Any time you have a question, just ask!
Caryn0 -
Caryn, I have been on an AI for sixteen months with no ses. This could be due to taking a tablet daily which contains Glucosamine HCI 1500mg and Chondroitin Sulfate 1200. You can find it at Costco or most drug stores. Also, exercise may help if you can manage walking or swimming! Great to hear you are still NED -congratulations!!!
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Thanks bestbird,
I already take glucosamine and chondroitin as well as exercise and work a very non sedentary job (I teach first grade). Sigh...I tried boswellia before and just bought some more. Will also add curcumin as Chrissy suggests. Between prescription meds and supplements I swallow way too many pills!
Caryn0 -
I am on Letrozole...since 01/2012. I have horrible foot pain. If I sit for more than 30 minutes and then stand up...wham! Feels like broken bones. It has been like this since I started onit. I'm ok with it as it is keeping me alive. Broken feet and breathing is much better than the alternative!
I exercise regularly (treadmill and bicycle) as recommended by my MO. I also take many supplements, including those stated above..to no avail. I dont get any phosphates (bio?)/zometa, etc...as my mets are not bone. Then again, maybe it would be even worse without it all!0 -
I can't tell you how much I appreciate these posts and discussions. I'm on Femara and get hot flashes about an hour after I take it. I mentioned this to the oncologist and he said it was "medically impossible" and "not a side effect" of Femara. I'm also using Zolodex and have a monthly Zometa infusion. I'm just using ibupropen and paracetamol for pain at this point. No side effects except a bit of muscle and joint pain, which is manageable. And of course the hot flashes, but given it's nearly winter in New Zealand, I just figure they're a bit of a bonus because I'm always cold (I moved here after nearly 20 years in Las Vegas, bit of a climate change!).
My oncologist doesn't believe in scans; he said that if my pain gets as bad as it was before I had the pin put in my femur, then it's time for an x-ray or maybe a scan. That's the down side of free health care; they tend to shy away from tests. It scares me a bit, but he makes a good argument. If I want one badly enough, he'll order one for me if I pay for it myself. I was just diagnosed in mid-February so I'm going to wait a bit and make the decision. My body's stll adjusting to all the meds and I'm still adjusting emotionally to all of this. I had the OncoType DX test when first diagnosed 6.5 years ago and had a "<5% chance" of recurrence, so this has been a bit of shock.
Thanks again for all the posts. Great information!
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Hi Kiwicatmom sorry you are joining us but welcome anyway. Getting used to the dx and all the meds and then coming to terms with the whole thing takes a bit of time so just be gentle with yourself. The docs over here tend to not scan unless one presents with some symptoms and that includes private. I think they look at it that too much scanning can cause cell damage so keep it as needs must.
Hopefully the Femara will do good things for you as it has for me.
Love n hugs. Chrissy
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Kiwicatmom,
Is your onc doing tumour markers?
I've had stage 4 for over 5 years and have had numerous scans, 2 MRIs and biopsies. Now I have come down to Dunedin my new onc gave me a bone scan on my last visit but said no ct scan unless my markers went even further up in the next 3 months. My bone scan came back stable and no new mets in 18 months so hopefully things are not hiding anywhere else. My mets have only been in the bone so far.
If you have any feeling of things not being right you should go back to your onc and get that scan and you shouldn't have to pay for it. It does depend if you are using markers to help show any changes. they don't work for everyone and some oncs don't use them but they have been a good indicator for me.
Moira
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Well the weekend is here and I am off work so I have time to worry and stress. It wasn't bad this week, I was pretty busy at work. I hope I am able to do the clinical trial, since they will scan me every 9 weeks. Even if I don't get the drug at least I get the scans. In Canada they scan every 12 weeks. I go on Wednesday this week to chat with the doc and find out if I qualify for the trial. It scares me to be in it as well as not be in it.
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@micheleboots, I hope you qualify for the clinical trial too. If I understand the description correctly, the medication being tested targets a different receptor than any currently approved drug. Unfortunately there's no participating site anywhere near here.
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Do any of you ladies get the pamidronate treatment once a month? I am wondering how it is going and what Se's people have experienced.
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Hi Michele,
I got monthly Pamidronate for a year and now get it every three months.i did have flu like se's after the first infusion and then one other time when they ran the drip too fast. Other than that, it's been very easy. Drink plenty of water before and after. Wishing you the best.
Caryn0 -
how long des it take?
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I don't know if we all get the same dose, but overall, it takes about 1 hour, start to finish. This includes accessing my port, starting a bag of saline, Pamidronate , flushing port. I drink lots of water as is it there, play on my iPad or correct papers. As far as infusions go, it's quite easy.
Caryn0 -
I'm just coming up to 1 year of pamidronate every 28 days, in Canada. I had flu-like se's for the first few months, then not so much. It does seem to dehydrate me, so lots of fluids helps. I also have small veins, so fluids help that as well. I don't eat solid foods the day of the infusion, I tend to have more digestive problems if I do.
They run the drip for 2 1/2 hours, then flush for 20 minutes. I'm really tired that day and most of the next one, but it's all manageable. It's working for me, I'm stable.
Let me know you have any other questions.
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Thanks
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I had less than a 1% chance of recurrence and found the DM in February 2013 also. February not a good month for either of us.
After the initial shock, I have changed my lifestyle. I am taking Exemestane daily and monthly Zometa infusions to strengthen bones. My tumor has "shrunk" by 33% in 10 days. I am stunned and the MO appeared to be also. I am taking the Budwig flaxseed and cottage cheese protocol, OmegaXL (from New Zealand), baby aspirin to ward off clots, calcium with Vit D, exercising at gym, organic everything including nail polish, hair, detergents, makeup, no milk products or low-fat, 20 minuts of sun per day, etc. etc.
I don't know what to explain the shrinkage, but I am grateful it is going that way for now. He will rescan in 2 months and I don't even see MO unless I need him before then.
My tumor is very hard and sharp stabbing pains from time to time. when I am doing nothing. go figure. some eye pain too. little stabs. I have read that others are experiencing that also.
Hang in there. with us!
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Hi! Everyone. I'm a newbie to the forum. My name is Dana. I'm new here. I have stage 4 with bone mets and possible liver too. (Getting an MRI tomorrow to see for sure, but something looked funny on my recent PET/CT.) I'm 36 now, was diagnosed at 27 after my second child was 9months old. Started off stage 2b with lymph nodes positive. Did double mastectomy, reconstruction, chemo, rad, and 5 yrs of tamoxifen and Lupron. Had 3 yrs AFTER that treatment "clear", until the bone mets brought me to stage IV. (sternum, femur, spine, humorous bone tumors) showed up. Terrible pain. Was diagnosed on Feb 27, 2012. I'm fighting now with hormonal treatment. Had ovaries removed, on femara daily and Xgeva shots & blood work monthly, PET/CT scans every 2 months now until my sternum "quiets" down again, and then hopefully back to scans every 3 months. right now I'm dealing with the possible liver involvement. Going tomorrow & Praying to God it shows up negative.
I came here for support. I know unfortunately I'm not alone with this diagnosis. I feel alone tho because I haven't talked to any survivors at depth. I'm lonely and scared. I'm divorced and my best friend lives across the country. So aside from my kids cheering me up, (12 & 10 and they don't know too much about Mommy's health, I try not to worry them) I really feel alone. Hoping to meet some new friends on here that I can help cope with all that comes along with the stage IV hormone treatment battle and who can help me as well
Thanks for reading.
~Dana
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Hey Dana, welcome to the lifeboat. I have a teenage son and I certainly empathize with you about not wanting to worry your kids. Stage IV cancer is such an isolating experience but I've found almost all of the people on this board to be helpful, empowering and simply beautiful human beings. Good luck with your MRI. How are you managing your pain? Do you have a pain specialist on your team?
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Hi Dana,
SO sorry that you are here. I know you'll find lots of love and support here. I will be praying for the results to be negative on the the liver.
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Dana, welcome to the club that no one wants to join. I am sorry that u don't have alot of support at home except for kids. We are all here for each other. We cheer each up. We cry together and also laugh together. Women on this board made me live again. I am a mom of 2 boys 7 and 16. I was originally diagnosed with bc at age 37 stage 2b that's what two of the doctors say an the other doctor told me 3a. I am leaning toward 3a. I was with NED for 3 years before I was diagnosed with mbc to the bone. so if u need to talk or vent go ahead we are here.
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Welcome Dana ... I, too, have to deal with this alone; however, the support here is just wonderful. I have sent you a personal message. Take care & thanks for reaching out.
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Hi Dana and welcome. You will find this forum a place where you can come to learn, vent, cry or just have a conversation.......we do understand where you are coming from so here is a great place for support.
Stage IV an be very isolating but this forum is filled (unfortunately) with women of all ages and ethnicities who gather to cheer each other on.
Love n hugs. Chrissy0
