Hormonal Treatment for Stage IV
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Heidihill- I am in no way a role model for BC but since mine returned after 7 years I went thru RADS this summer then advised to go back to the Tamoxifen as my MO suggested. Tried it twice over the past 3 months and decided to stop it now. I had every imaginal SE , mood swings terrible and had not even thought about it but got the vag discharge thing too. At 66 ,I was shocked. I worry about endometrial cancer. Only thing left to try will be the Faslodex injections. For now I am enjoying family time and trust tbe good Lord will be with me regardless. Hang in tbere and ask your MO help you get thru this.
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Grammy, you hang in there, too! The side effects have already abated for me, which now makes me worry if it is still working.
Hope you have good luck with Faslodex.0 -
Heidihill, presence or absence of SEs from these drugs is NOT related to whether or not they are working, so you can rest easy on that one! Glad your SEs are easing!
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chrissyb, wow I can relate to the bursts of energy followed by paying for them. I crashed today! It's after 6 PM and I haven't mustered the energy to even want to shower and dress let alone get up and do it. I am sitting here imagining going to services this evening with uncombed hair and still in the sweatpants and t-shirt I slept in.0 -
Chanah I love it when the energy hits.........lol........and luckily there is only DH and myself at home now so I have no problem with the catch up but that feeling of lethargy gets really hard to handle sometimes. Oh and still being in your sleeping attire at the end of the day? Oh yeah......sometimes that is my uniform also........thankfully not many people come to my door........hahahaha!
Hope yours passes soon.
Love n hugs. Chrissy0 -
Well, I did it, I roused myself, showered and dressed and got out to services. Surrounded by friends a bit of vitality returned. Now home, I am surfing the net avoiding getting off this couch to get undressed. I do find spending time with frineds and family recharges my batteries. I wonder if I suck their energy and they go home exhausted.
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Probably but I'm sure they don't mind a bit.......lol.0 -
Hello, I am new to this forum. Hoping to have some interactions and support from you sweet ladies. I have been on Faslodex for 2 years for my bone mets. I have no side effects except for soreness and itching at injection site for about 4 days after every treatment. I was doing zometa infusions but my onc switched me to Xgeva. No side effects from this either. However, my tumor markers have climbed from 88 back in the summer to 107 last month. I am going to be scheduled for a petscan at first of the year. I hate those things and get "scan-xiety" every time I go for one. Hugs, love and prayers to everyone!
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Hi, carolinachristy, and welcome. Come on over to the Faslodex Girls thread!
Tina0 -
Hi Carolinachristy and welcome! Information and support is what we are all about and I'm sure you will soon feel right at home.
There are loads of dedicated threads for different treatments that I'm sure you will find very informative and 'talking' to those who are having the same treatment is a good thing.
Tumor markers can be a good indicator of things happening for some but for others they are totally unreliable. It sounds like for you they work well but always remember, a rise like you have had is not a large rise and can be caused by your body fighting an infection or inflammation not just the cancer.
Scan-xiety is a real pain and can really put you into a blue funk but I think I would rather know exactly what my cancer is doing than not.......hopefully you can relax a little and not let it get to you. Good luck for good scans!
Love n hugs. Chrissy0 -
Yes, good luck CarolinaChristy! One month my CEA climbed a bit on FAslodex, but the following month it was back down. I think if there is a pattern of a few months it's more worrisome than one that bounces up.
In any event, good luck with your scans. I hope they show that your cancer is fast asleep.0 -
Welcome Carolinachristy0 -
I'm fast approaching the end of year 3 on arimidex. I began on 2/11. At first I was NED for a few months and then later the scans showed my lung nodules to be STABLE. My scan results last week have me still stable with some nodules shrinking and a couple slightly larger. My husband was with me and asked why some could increase while others got smaller. The oncologist said to just look at the big picture not the very little changes. I am going to focus on that. That awful cough I had in the beginning is gone and for that I am happy. Another scan in 2 months as I will be getting another new oncologist and she wants to start fresh. Thinking of you all every day. Nan
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Ninalee that's great news!!! It's nice to know that these little pills can be so powerful. Hoping you continue to be 'stable' for a very long time.
Love n hugs. Chrissy
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ninalee,
Fabulous! I have 2 1/2 years on Arimidex and am still NED. I am very happy and hopeful that I still have many options to go. Wishing you the best.
Caryn
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I had mixed results my first 4 months on Femara. The 4 lung nodules disappeared while 3 new ones appeared. Four spots in liver stayed the same and one new small spot appeared.. The single small spot in the rib stayed the same. Total 4 spots gone, 4 new ones.
This time she decided to lower from a 4 month interval to 3 months, so my second set of scans will be on Feb 10.
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Chanah some oncs would call that reasonable as the 'new ones' may just have been too small to see but the next lot of scans will hopefully tell the story and they too have shrunk back.
Keeping my fingers crossed for your scans to be good on Feb 10.
Love n hugs. Chrissy
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Thanks Chrissy. I am getting better at staying positive, enjoying my life and letting go too much worry. Not always but lots of the time. lol
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DX 12/1/13 Infiltrating Lobular Carcinoma, grade 3, 8cm+ Stage IV Mets to Cervical, Lumbar spine and sternum, confirmed in PET scan ER+/PR+/HER2-
I'm a newbie to this site, so forgive any mistakes I might be making. I am a survivor of Diffuse Large B Cell Lymphoma, Stage 2B. I was under the care of an oncologist from diagnosis Feb 2009 until May 2013 with my next scheduled checkup Nov 2013. I had my yearly mammogram in Oct 2013 and they saw "shadowing" in my left breast. Ultrasound done, Biopsy suggested. 1st Biopsy 11/4/13, 11/6/13 told I had infiltrating lobular carcinoma. Went to a local breast surgeon for initial appointment, she scheduled an MRI because she said it felt like it was more involved than the mammograms and ultra sounds showed. In the space of 2 weeks, my nipple indented and it was found to have grown into 3 of 4 quadrants. Initially the breast surgeon wanted me to go to the oncologist I'd been seeing for years. I told her I had zero confidence in her since I'd been reporting symptoms of increased fatigue and bone pain on every visit for the past year, which she said were nothing. The breast surgeon told me she'd call the office and set up an initial consultation with the oncologist so I could at least start looking at options sooner rather than later. It took 1-1/2 weeks for the oncologists office to contact me. By that time I had been researching places to get a second opinion and contacted Cancer Treatment Centers of America Midwest - a breast center for excellence. I told the oncologist's assistant I would not be making an appointment with them and was going to seek a second opinion. The breast surgeon immediately called me and said I couldn't ignore the start of treatment. I told her where I was going and she said it was a good place for a second opinion. She asked me to ask them about performing a sentinel node biopsy to check lymph nodes. CTA chose not to put me through a surgery and ordered a PET scan instead. That's when they found the mets in my bones. Started Arimidex that day, along with a shot of XGEVA to protect my bones. They also suggested additional vitamin D, increased the Krill Oil I take daily and added Ginger Root. My next appointment at CTCA was 1/17/14. Breast tumor is now 1cm and tumor markers are down. I was given another shot of XGEVA and do not return until April. I know I'm just starting out here. I've just started to look for resources and support. I've read that the Arimidex is something usually prescribed for 5 years. Then what? Also, I have no tolerance for most pain meds, I find heat sometimes helps. I was supposed to get evaluated for physical therapy at CTCA on both of my visits. Cancelled the 1st one because I vomited for 2-1/2 days and that's not a good way to start physical therapy, the 2nd one was cancelled because the snow storm we drove in was picking up steam. Has anyone found physical therapy to help with pain?
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Sharon,
Looks like you are getting good treatment. Glad you chose a 2nd opinion--bc is nothing to mess with. I had stage IV from the start & my surgeon decided not to take out lymph nodes but he did do sentinel node biopsy so I did not have any lympedema after bmx. He said since cancer was already invasive, there was no need to take lymph nodes out---chemo worked to eliminate tumors. I also have bone mets from the start & I'm doing Zometa.
I did have physical therapy for frozen shoulder & arthritis after bc. I takes time to get better. Maybe you can hold off until weather gets better. Some places have lyphedema clinics with therapists experienced with this.
Best wishes on your treatment.
Terri
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Dear Sharon,
I too was diagnosed with Breast Cancer in Dec 13…Originally stage one but quickly discovered to be stage 4. I have applied and been accepted to the University of Florida Proton Institute for Metastatic Cancer. this deal is really really new….I go in three days for my first consultation…The goal of this respected medical center is to change Stage 4 from incurable to curable. I have high hopes…I have been very disappointed with what is supposed to be excellent care in the US. I too am on Arimidex but I want to go for the cure…Hang in there and continue to look for the perfect treatment for you…Carolyn in Nashville, Tn. USA
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Hi Sharon and welcome to BCO. Yes, it sounds like you are getting good treatment but for your pain, if it is really bad, radiation treatment can help a lot. Also Boswellia and Curcumin are both natural anti inflammatory and seem to help as well. I take both as I don't react well to normal pain meds either. If these are not enough to control your pain there are loads of support meds available now that may allow you to take the normal ones with less problems.
Also on these boards there is a 'Bone Mets' thread which has some really good information as well a group of great women who I'm sure will welcome you.
To give you hope, I am almost fives years out from my stage IV dx and doing well and my only treatments have been Arimidex and now Femara.
Love n hugs. Chrissy
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Sharon, physical therapy is a great idea! Moving the joints helps with the pain from AIs. At least it did for me.
Car2tenn, good luck with the Proton therapy. It does sound promising!
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Sharon welcome. These boards are an amazing place for support.
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Thanks so much for reaching out to me Carolyn, I'd love to hear how you're doing with the Proton Therapy, it does sound promising. I pray for a cure for you
Hugs,
Sharon
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Thanks Chrissyb. I go back to CTC in April, I'll ask them about boswellia and curcumin. I am exercising and hoping to start PT in the next week or so, until then, it's heat and OTC meds: Alieve, ginger root and krill oil (all are supposed to help with inflammation). I also have "Lidoderm" patches, but they only help with the neuromuscular and nerve pain, not the bone. I'll hunt for the Bone Mets thread too.
Thank you all for being so helpful and reaching out to me. God bless you all. Sharon
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I am going for another PetScan this Friday and another tumor markers test. Prayers are appreciated. Stage IIIA in 2002, full remission right after. Now Stage IV found last June 2013. Mets to skull, spine, ribs, sternum, pelvis, tailbone, upper left arm. Had some pleural effusion on right lung (gone) and positive lymph nodes in chest (gone). Been on Arimidex since June 28th (when I was first diagnosed) the same drug I was on from 2003-2008. Got on Xgeva in October. So far it's worked and tumor markers came down each two months (when I get tested) but still high, and Pet scan shows regression. Gotta run for now. Thanks!
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Wanderingspirit, good thoughts coming your way for good results! It's good that your markers are coming down and your PETs are showing regression........long may it carry on!
Love n hugs. Chrissy
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Proton therapy changed to VERO
Have just returned to Nashville, Tn from Jacksonville, Fl. The Proton Institute ass/w Shands Hospital.
Fabulous medical environment. Caring, compassionate and up on their game. I will start radiation with the VERO equipment in two weeks. As I understand it there are only 2 or 3 of these machines in the USA. Therapy will start on thoracic 7 which is the worst of the bone mets. My hopes for a cure are dashed due to too many mets but for those ladies who only have one or two lesions they are changing lives with total cures. Nevertheless, I am happy I went for the second opinion and I will be going to them for all my care. After VERO, then maybe Chemo in addition to Arimidex...Don't know everything as the game is developing as I go along. I was thrilled with the full day of orientation and consultation..Beats anything we have here in Nashville, Tn. Carolyn
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Carolyn so glad you are happy with your treatment protocol.......I think it makes all the difference for us mentally to feel comfortable with what's happening. Next steps are always uncertain as they depend on how we go with the current one but a good way to look at it is as a rose bud that opens slowly and each petal brings something new.
Good luck with everything!
Love n hugs. Chrissy
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