I'm back again with more details about my diagnosis. I was diagnosed with Stage IV Infiltrative Lobular Carcinoma in June 2015. ER/PR+ HER2- Mets to spine, rib cage, pelvic/ileac bone and right clavicle. I never had early stage breast cancer. Stage IV at original diagnosis. Hardest thing I've ever had to hear, there is no cure. My oncologist immediately put me on Ibrance, Faslodex, Goserelin and Zometa. This treatment plan is still working exceptionally well and remains my front-line treatment. I just started cycle 20. I've been No Evidence of Disease for about 12 months. I am trying to learn to live fully despite the side effects of these meds. They are tolerable but also at times debilitating. Joint pain, muscle fatigue, tender scalp, phlegmy cough... getting around well can be a struggle. I'm definitely not as strong as I used to be. But, I am alive and very grateful to have been given time. Time is all I seem to think about nowadays. Because I am stage IV DeNovo and I've responded so well to this treatment combo, I have been able to avoid IV chemo, radiation. I also never had a lumpectomy or mastectomy. Anyway, that is a brief summary of my diagnosis. I am hoping this plan will continue to work for me for a long, long time!
Diagnosed June 2015...: I'm back again... - SHARE Metastatic ...
Diagnosed June 2015...
- Cancer and tumours
- Chemotherapy
- Goserelin
- Mastectomy
- Lumpectomy
- Breast cancer metastatic
- Ibrance
- Zometa
- Faslodex
I too was diagnosed with Lobular cancer. It was first discovered in my ovaries.then it was discovered in my breast. I decided to fight it with full on Chemotherapy and radiation. I have had a lumpectomy and a mastcectomy, 3 reconstructive surgeries. I am looking at having another reconstructive surgery because my right breast which was radiated won't heal. I have had infections and have had skin die. So someday I will be semi normal. My oncologist list me as NED, no evidence of disease. I am on Ibrance and Femara. I live a pretty normal life. Just tired at the end of the 21 day cycle of Ibrance. All in all I feel pretty blessed to have such wonderful care.
Lobular is so sneaky. I had it for a long time before it was discovered. It was hiding amongst dense breast tissue so went undetected by mammo for several years. I didn't even know anything was wrong until my left breast began to feel firm along the side. Totally blew my mind that I was already stage IV. I didn't even feel sick or have any pain. Anyhoo, From what my oncologist explained, because I only had mets to bone the standard of care was to hold off on IV chemo until such time it spreads to soft tissue. So, I was able to start with hormone therapy combined with Ibrance. The Zometa is to heal the damaged bone. If I had had mets to the liver, lungs, ovaries or any area outside of the bone I would have started with IV chemo. I was very uncomfortable with this treatment plan initially but now that I've been NED for almost a year and have had time to do a lot of research I understand more about the process and know that she made the right plan for me. I'm happy that you are NED. That is a nice place to be isn't it?? 
Yes, I'm so glad that you are NED. I couldn't feel anything wrong, just fatigue! At that time I was working on painting all of my house. And I was so tired. I thought that it was related to needing a hysterectomy. Thank goodness I decided to take the ovaries out also. It's been an adventure for sure. I'm so glad that we have wonderful oncologists to help us through!
I'm just on Femara right now to give my body a break from chemo infusion after 19 cycles. I'm very curious about how much different the side effects are from infusion vs. Ibrance chemo pill. Can you tell me your experience?
I've never had IV chemo so I have no experience with side effects from that to compare. But I have found Ibrance to be very tolerable. Most days I am able to function normally. I have a low platelet count all of the time so I bruise easily. I have a very tender scalp. Fatigue can sometimes be a problem but I usually take that as a sign that I'm overdoing it and just rest more. For whatever reason Ibrance causes a sweet tooth which is highly annoying. Craving sugar when I'm struggling not to gain weight is a challenge. Ibrance is a 21 day cycle. 3 weeks on and one week off to recover. I have found that the longer I'm on Ibrance the more I'm able to tolerate the side effects. My numbers continue to improve. I have more side effects from Faslodex and Zometa than Ibrance. Those two drugs cause me to have a lot of muscle and joint pain.
The sweet tooth, the cravings, IMO could be related to the change in taste buds. I find things taste differently,unlike traditional chemo, not drastic changes, but changes.
Congrats on no evidence of disease (NED). It is something that I dream that I will be told someday.
That is my dream for you too! I know that at any time it can change, so for now I am just trying to live, live, live...
So glad your treatments are working! I too have Lobular BC, ER+, PR- and Her2-. I also have dense breasts and a mammogram showed a little pattern of calcifications in my left breast in 2012. That led to a lumpectomy + radiation. If I had had a bone scan or CT scan it would've shown that I too had Stage 4 from the get go. No scans were done on me before or after surgery. 11/2 years later pain came to my left rib area, then my right rib area. Finally x-rays, CT scan + MRI showed bone mets to ribs, pelvis, spine. My Onc is giving me one drug at a time. The hormone drugs didn't help me. I'm now on Xeloda and have been stable for 1 1/2 yrs on it.
Are all your bone mets gone? Do you have tumor markers done on your blood monthly? My markers are monitored each month. They go up and down. Bloodwork shows that I still have cancer cells in my bones but it's stabilized. I'm on Zometa too and now get infusions every 3 months.
Yes, Lobular BC is sneaky...the surgeon told me that. My Oncologist said he is going to watch me very carefully. So far he has. I'm hoping to stay on my regimine a long time too! I'll keep you posted.
Meanwhile, enjoy your cancer-free status! Here's hoping that you'll stay that way forever!! Best wishes. Kats3
My understanding is that they can't get the cancer out of the bone. Zometa is primarily for healing the damaged bone, decreasing pain and preventing fractures. After a year of Zometa every month, I am now only getting the infusions every 3 months. And, it has worked very well in healing the damaged bone. The doctor said it is okay for me to lift again. Bones look much stronger. The hormone therapy/Ibrance is the most important part of my treatment in keeping the cancer from spreading. So, even though the cancer is not active, it is still there. Just sleeping soundly... And, man I do hope it stays asleep forever. Wouldn't that be a dream come true!
In the beginning I had TM's done every month. But, I've been stable/NED for 12 months so now I only get them right before my scans. So, every three months.
Very glad Xeloda is working for you... I hope you stay stable for long, long time.
Hi,Kats3,
It sounds like my situation is similar to yours. Dense breasts, invasive lobular carcinoma, hiding, calcifications, but discovered when another lump above it showed up on mammo and ultrasound.
Diagnosed in January 2016, but I had a lumpectomy then a partial mastectomy with oncoplastic reconstruction. ER+, PR-, HER2- Then chemo (Taxotere and Cytoxin) 4 rounds. When they were setting me up for radiation in July, that's when they discovered the bone mets, one front rib, bottom of sternum, 6 of the 12 thoracic vertebrae, and base of skull. Started Zometa as well as radiating skull base. So onc felt we were stabilizing skull, very important.
In the meantime, they took a biopsy of T11 to ascertain if the cancer had changed. Confusing results; it came back as ER- but the lab process to dissolve the calcium in the blood can show up as false negative. We also did a new blood test (not yet FDA approved), that showed up as -, with a moderately high number of CTCs (circulating tumor cells). In spite of two tests showing the cancer as negative, 3 oncs by this time said my cancer was behaving as if I were still positive. "You would be sicker than this if you were ER-."
So scans in late September, early October, "stable" (but in more bones--hips especially, how is that "stable"?). A biopsy of the left hip, but failed to get a bone sample. So the plan was to treat it as if it were ER+. Continue monthly Zometa infusions, add Letrozole and Ibrance. But my bone pain was increasing and by mid-December I was also having muscle spasms. Did a MRI Dec. 16 and found mets T11 through S2 and more of hips, plus liver mets. Radiation 20 times helped the pain, and has that area starting to heal (scans Jan 27). And the good that comes with the bad is that there was soft tissue involvement so they could get a good biopsy (Dec 29). And it came back conclusively as ER+. Discontinued Ibrance and Letrozole, and about ready to start Xeloda; hangups getting the Rx shipped.
I know this is a lot of detail, but I learn so much from all of your stories, and am hoping to help others learn from my story. Many people have said Xeloda is working for them. I am grateful to know the next step for me, and for all the researchers and brave pioneers who are going these roads.
I've not been able to keep up with posts on this site recently, mostly because of the extreme fatigue I was feeling. Fatigue from radiation and my B12 and thyroid levels being way off. But I'm 2+ weeks of treating that, and am better. Still need 1 to 2 naps a day. And need to improve my nutrition and exercise. Thanks for the encouragement out there! I embrace hope, faith, and life each day.
One thing I am learning is that ILC behaves very, very differently from Ductal. And, I've been keeping up with the new research developments specifically for ILC. I am considering reaching out and finding a breast cancer specialist to give me a consultation before I head into my second line treatment. My current treatment is showing signs that it might be failing and I may have to switch to something new very soon. General oncologists just aren't able to keep up with all of the new information coming out pertaining to ILC because it's not as common. And, because they treat so many types of cancer it's just not possible. My oncologist is a general oncologist but I don't have a choice because I am pretty much stuck with using our military hospital physicians. My care is absolutely free which is a positive but they don't have specialists for everything in the military hospital. I'm going to push for a referral to see a specialist if I can for a second opinion on how my treatment is being handled. I have been NED/stable for 20 months now so I feel they are doing a good job but just want to make sure that all possibilities are being considered.
I've been hearing good things about Xeloda. I am thinking of asking her to consider that next when this treatment fails.
I'm trying very hard to lose weight. It's not easy with all the joint pain and fatigue. But, I've gained about 60 pounds since diagnosis and I feel terrible. I'm on a no sugar, no carb diet right now and we'll see if that helps.
We all need to encourage each other... each day is a struggle and we need all the positive reinforcement we can get.
Hi Susan,
Was wondering why the Ibrance + Letrozole were stopped with you? It's interesting that you're going from Ibrance + Letrozole to Xeloda and I'm on Xeloda and will be heading to Ibrance + Letrozole.
I have mets in vertebrae, ribs + pelvis and so far radiation to any of these areas has not been recommended. My left rib area kills me if I do too much physically, like lifting or vacuuming. Who knows? Maybe radiation will be recommended for that rib area? I see my Onc at end of Feb. and we'll discuss this and my tumor markers etc. He wants me to have a CT scan at end of March.
I find it interesting that you had a another biopsy on T11 to see if the cancer had "changed." My Oncologist told me that that is very rare. In my reading about Lobular BC, they say that it's usually ER+. Yours is, and so is mine.
I'm on Zometa now every 3 months.
I experienced lots of fatigue after radiation after my lumpectomy but my Radiologist said that I shouldn't be that tired and suggested I have my thyroid checked and, sure enough, I had a low functioning thyroid and was put on 50 mgs of levothyroxin. That helped me tremendously. I'm still on it. Is your doctor checking your red/white blood counts? They say with Ibrance, those counts go down and results in lots of fatigue. You may need Procrit shots if your Hemoglobin level is too low. Ask your doctor abt this.
I'm taking a whole food multivitamin at the Health Food Store. I pay more $$ for them but they're worth it. I'm trying to do more walking for the exercise and fresh air too. I also take a whole Food Calcium and Vitamin D3 supplement for my bones. My doctor is checking to see if the Turmeric and Ginger capsules I want to take won't interfere with the Xeloda pills. I've been on a reduced dosage of Xeloda for 20 months. This dosage doesn't give me side effects. We just have to make sure that it's stopping any progression of my BC cells.
Let me know how you're doing when you start with the Xeloda.
Wishing you well. Have faith, pray, and believe that you'll you'll be healthy. Positive thinking is so important! Bye for now....
Kats3
Hi again, I wanted to ask you if, after your breast biopsy which showed lobular BC, did you have many screening tests done such as a bone scan, MRI, CT scan etc.? I didn't. For me, the area of concern was so tiny that a lumpectomy was recommended. A positive node was found, however, when a sentinel node biopsy was done at the time of the lumpectomy. Still, it was felt that all I needed was radiation of that area plus Arimidex. 1 1/2 yrs later there were the bone mets! I was very upset that I didn't get a 2nd opinion at that time.
My 1st Oncologist did no tumor markers on me nor any scans in that 1 1/2 yrs. He's no longer my Oncologist. I received Zometa for 2 years ending this past Nov. My bones feel so much better! I don't get scans every 3 months like you. How long will that go on? My recent scans + x-rays were in Sept 2016. My doctor prefers looking at my TM's as a guide to how I 'm doing.
Also I wanted to ask you if you're getting all 4 of your medicines at the same time? The Ibrance, Faslodex, Goserelin, ( don't know anything abt that one...) and then the Zometa every 3 months? Were you ever on Xeloda?
Lastly, can I ask what State you live in? I'm from MA.
Thanks so much for sharing your experiences with us. I'm especially interested as I, like you, have Lobular BC and strictly mets to my bones.
Thanks for any info you can share with me and all of us! Kats3
I went in initially for an early mammogram because my left breast was very firm on one side. No pain or discomfort or lumps, felt like a clogged gland. They were not able to see anything conclusive on the mammogram because I have dense breast tissue. They knew there was "something" going on so they took me immediately after my mammo to do an ultrasound. The ultrasound was able to pick up a mass deep inside the breast buy they still weren't able to determine exactly what it was. They kept saying it was probably just a cyst. But, when I looked at my mammo images in the ultrasound room my arm pit was lit up like a Christmas tree. I knew then without them saying anything more that something serious was going on. Because they weren't able to see the mass clearly due to my dense breast tissue they decided to explore further and scheduled me for an MRI and biopsy. The biopsy came first. As soon as the doctor came into the room to do the biopsy she told me that just by looking at the scans that she was pretty confident it was breast cancer. She was very familiar with Lobular and knew what it looked like. At that point the biopsy was just protocol to determine the pathology of the cancer. She also biopsied my lymph nodes under my arm pit. I had the breast MRI done within a couple of days. By that time they had already confirmed it was cancer and I was on my way to the breast care oncology team. From the breast MRI they were able to see the full size of the tumor that had grown deep in the breast and had begun to spread in strings. At that time they had me placed at stage 3 and were still talking mastectomy, radiation and chemo. But, my oncologist was concerned about some of my other complaints. I was having some mild back discomfort and my upper arms were very weak. She and the team decided to send me in for a PET/CT to make sure it had not spread. I was very lucky to have been diagnosed by a team of doctors. They all examined me on the same day and then after collectively discussing my case and comparing notes took care to make sure all areas had been looked at carefully. The PET/CT scan determined I was stage IV. They then scheduled me for a bone biopsy to confirm that the pathology of the bone mets was the same cancer I had in the breast.
Yes, I take all of my meds at the same time. I go in once a month for my Goserelin implant, Faslodex injections, IV infusion of Zometa and to get my bottle of Ibrance. Goserelin halts ovary production. It is only for women who are pre-menopausal and still have functioning ovaries. I was getting Zometa monthly for about a year and now it's every three months. This is my first treatment plan so no I've never been on anything else. Ibrance was brand new when I was first diagnosed. It had only been available to MBC patients for a couple of months. She put me on it immediately because it had shown amazing results in clinical trials for extending the length of progression free months when combined with hormone therapy. And, I am one of the success stories with that drug because I've responded significantly well to it. There is another drug similar to Ibrance that she plans to put me on next if or when this treatment plan fails called Ribociclib. It was just fast-tracked into the market from clinical trials. It is also showing great results when combined with hormone therapy.
My oncologist always does Tumor markers in conjunction with scans. She feels doing both gives her a better idea of what is going on. So, I get both every 3 months. I've only been in treatment for 20 months so I don't know how long I will continue to be scanned every 3 months. I imagine if I remain stable for a few more cycles she may consider longer breaks between them.
It's hard to say if you had mets at the time of your original diagnosis. But, I believe that every woman diagnosed with breast cancer should get a full body scan before determining treatment. And, with lobular I definitely believe that because of it's difficulty to diagnose and the fact that it spreads differently than ductal. Probably was a good idea to change oncologists.
I hope I've answered your questions... if not, just let me know!
Oh, and I live in Texas...
Kattown, I am SO grateful for all the info you shared! You've gotten and are getting excellent treatment. I didn't know that Ibrance was administered as an infusion. I believe that there recently was a clinical trial with Ibrance and Femara ( Letrozole) called the Paloma trial, and it showed very positive results. I may be headed for that treatment plan if and when the Xeloda has run its course.
Yes, women with dense breasts should have a 3-D mammogram each year followed by an ultrasound. In my case "something" showed up on a yearly mammogram in 2008 and was listed as " probably benign." The following 3 years I was told I had normal mammograms. Then along came 2012 and that "something" from 2008 started showing itself more. I wish I had seen that lab report from 2008 because I would've insisted on an ultrasound and more testing. Water over the dam now. But for 4 yrs things were brewing and most probably spreading. No one bothered to look further into my case.
I am post-menopausal. My breast biopsy showed that my cancer was Stage 2, a slow- growing cancer. It certainly had enough time to get to several bones and put me in my present situation! I think my first Oncologist was shocked to find out that I had developed bone mets. He certainly didn't help me. All my tests were done by my Primary physician. I was put on strong meds for the rib pain and this caused loss of appetite and loss of weight. I ended up in the Emergency Room twice getting IV's of Zofran for the nausea. What a nightmare! That was 2 yrs ago and I'm happy to say that my appetite is back and I've regained several pounds. I do have pain in my torso and back if I do too much. I'm not sure if this will go away. Do you have any bone pain? If so, what do you take for it? I just take Ibuprophen and use heat and Voltaren gel on the affected areas.
At times my energy level plummets. I went to a Health Food Store and bought a really good natural multivitamin plus some energy powders to mix with water when my energy gets very low. I don't like this feeling. I so wish I could be normal again doing all the things I used to. This whole Mets business has turned my world upside down. I don't know how you feel about it. I'm glad we have this site to at least communicate with others who are in the same boat.
Thanks again for your input. You've helped me more than you can know. Keep in touch! And good luck with your journey! Kats3
Ibrance is not available as an infusion. I must've got my medical terms mixed up! There are so many... lol. I get Zometa as an IV infusion.
I always get some bone pain for a few days after my treatments. The doctor says that is a side effect of the Zometa working on repairing the damaged bone. It has gotten a lot better. And, my scans show that the bones look much stronger.
For bone pain my doctor gave me a prescription for pain patches and that seemed to work pretty well. I also use a combination of Motrin and Tylenol during the day. It's okay to take those together. I try not to do it all of the time. Just when it's really, really bothering me. Most of my pain was in my back and rib cage so when I was out and not able to use a heating pad I would put those on. You can only use them for 12 hours and then you have to take 12 hours off. And, you can't use them in conjunction with a heating pad. My doctor also gave me a prescription for Tramadol and I take that every night before bed. I am more achy at night and it was keeping me awake. Tramadol makes me very sleepy so it's a good med for me to use at night. The good thing about Tramadol is that you can take it in conjunction with Tylenol and Motrin. So, if Tylenol and Motrin aren't doing the trick you can take a Tramadol for additional ammunition for the pain.
Life is never the same again with Mets... I've had to give up a lot of things I used to enjoy. But, I have been trying to replace those with new things that are within my capabilities. I go for short walks and I write and I'm thinking of joining a very low impact exercise class to help with my joint and muscle fatigue. The doc says it will help if I try to do some Yoga for gentle stretching and breathing or some low impact swimming or water aerobics.
Keep hanging in there... Mets is no easy road but we still have a life to live! And, it's important that we support each other. Happy to contribute in any way I can.
Thank you again. I'm not sure if I was ever prescribed Tramadol but may have in the beginning. I know I was on Ocycodone when I was at my worse. It helped but made me nauseous after a while. Thank God the Zometa helped heal my bones and lessened my pain. I'm just on 400 mgs of Ibuprofen now but do use the Lidocaine patches like you when I have more acute pain in certain areas like my pelvis. I also rub Voltaren cream on achy areas off and on. It's a prescribed gel, stronger than Ben Guay and other OTC ointments.
That's interesting that you mentioned taking up Yoga and swimming. I was thinking the same thing! I actually went to one gentle swimming session at the Y last month. I don't know if I can do the "mat thing" with Yoga though. I think I'll look into it. Before the Mets situation I was going to aerobic classes, Zumba, etc. Now I'm going for 20-min walks. Those help especially with making me feel better psychologically, being outside breathing in fresh air, etc. I want to slowly get into nautilus with using light weight machines to tone up my upper arms. My Onc said it would be okay if I don't do any heavy weights. We'll see.
Did you lose weight during this whole thing? I did. I didn't like it at first. It made me nervous. Now I'm ok with it and feel that my weight has stabilized. I'm down about 18 lbs, but was somewhat overweight before this bout. I'm in the normal weight category now.
You sound like you have a very positive attitude about your situation. That will bode well for you. I panicked big time at the beginning but have now come to terms with it. I'm doing my best to stay positive. I say my prayers, visualize that I'm well, and go about each day as best as I can. I'm also trying to stay away from junk food and too much sugar. I take supplemental vitamins also, which I think is helping me with my energy level.
That's it for now. Keep in touch! Kats3 😇
Sadly I have quite the opposite problem than you. I have been steadily gaining weight. Every month I am a couple of pounds heavier. One side effect that I have with Ibrance is a sweet tooth and I am always hungry. And, it only got worse last March when I had a gall bladder attack and had to be hospitalized for a week waiting for my platelet counts to go back up so they could do surgery. They said it was common to gain weight after losing your gall bladder. I've had the odds stacked against me for a while now but I'm determined to get my weight back under control again. I just started a diet which is pretty simple. No sugar, lots of water, more fruits and veggies and less snacking. Trying to watch my calorie intake. I've gained about 50 pounds since diagnosis. I used to be very active and I want to be active again. I can't jog anymore but like you I go on short walks just to get outside into nature. I love to swim so I think I would enjoy giving that a go. My onc gave me the green light to do light weight lifting again. I have to get control of this weight gain. I can't afford to keep buying new pants!
I can only tolerate Percocet in small doses. I only use that if I'm in extreme pain. And that is rare. That's another thing I like about Tramadol. The only side effect I really have from that pain reliever is that it makes me sleepy.
Hello again,
So do you think the Ibrance causes an increase in appetite? It seems that I pretty much eat anything I want and don't put on much weight.
Can you swim outside in the winter? Is it cold in Texas right now?
I went to the Health Food Store today and bought mushroom tea bags and also instant coffee made with different mushrooms! Sounds crazy huh? Mushrooms are a natural food and my Oncologist said I could have natural supplements including organic turmeric. It won't interfere with my Xeloda. I show him any and all supplements and he did mention that a lot of research is being done on turmeric as a spice that can affect cancer cells.
I'm trying hard to stay away from sugar. My tumor markers have been climbing these last 2 months and I really want them to go down! If they go up again this month I believe I'll be put on Ibrance. The Xeloda has been agreeing with me, so I really don't want to change at this point. I'll be anxious to find out if my supplements will affect my markers for the better.
Wow! You've been through a lot what with adding gallbladder surgery on top of everything else! I'm glad you did ok with it. My older brother just had his out 2 wks ago. So far he's doing fine.
Good luck with the diet and exercise! I wanted to walk today and it just didn't happen. The day goes by too fast!
Take care.....! Kats3
Hi again, Was just wondering if your doctor was thinking that perhaps removal of the ovaries would cut down the estrogen level even more for you. ???
Kats3
I want my ovaries out. Doctor is very persistent about not doing any evasive procedures unless it's absolutely necessary. I would have to come off of Ibrance in order to do the surgery. But, I would be able to stop the Goserelin implants and it would be one less med to take every month. Might ease my side effects. I'm planning on talking to her about it again our next visit.
If you go on Ibrance I think you will find that the side effects are very tolerable. Let me know if they put you on it and I can help answer any questions you may have.
Texas is pretty warm but pools aren't open year round. They are closed right now. I'd have to join a gym or something to swim laps. I think for now I'll just stick to my walks.
I've heard a lot about Turmeric. My doctor gave me the green light to add that to my diet if I want. She said that some patients say it works well for inflammation but others haven't gotten any benefit from it at all. But, it sure can't hurt to try!
Anyway, it's late so I better get off the computer. Talk to you more later...
Hi. It's very encouraging to hear your story and that your treatment plan is working so well. Im Stage IV as well but mine is Mets to my lungs. My tumors have shrunk considerably on chemo. I had 19 rounds and then had to stop because it was doing more harm than good. Some call it a chemo vacation. I'm on Femara, a hormone blocker, for now. I'm feeling more like my old self. It's a roller coaster journey.
Yes, I do believe it is our worst boyfriend yet.
I have similar, denovo IV with bone (pelvic) Mets, in my nineteen month,ibrance and letrozole, thinking partial remission. Yes the fog and fatigue is stunning. Interesting about the tender scalp, I have that too. So odd. But I am grateful to live a decent life.i. Also take xgeva for the bone Mets. Did you decide not to take that? Why? Also are you having hair loss, mine is thin, but I still have to get legs waxed.
I was never offered Xgeva. It's just what my oncologist decided to start with so I went with the flow. It's an IV infusion instead of an injection. I haven't lost any hair at all on my head. But, I find that my body hair tends to be thinner and it grows slower. I don't have to shave as often as I used too. I still get hair on my upper lip. I find it strange because some women I know on Ibrance are losing quite a bit of hair on their head. Kind of peculiar that the side effects differ so much between patients.
yes i get the lip wax too. damn, it is not fair...
read about xgeva, it is newer than ibrance. we are doing it for preventive reasons. no recurances in three years in trials.
I'll have to talk to my oncologist about Xgeva and see why she went with Zometa instead...
Xgeva is the more current bone strengthener given as a shot. Zometa has been around for a whole lot longer and given as an infusion. Both help heal the bones. I think it's a matter of preference on your doctor's part as to which treatment you get. I know some women have had allergic reactions to Zometa, so it's good that there's an alternative bone strengthener for them. I've had 24 infusions of Zometa and have had no problems with it at all.
Kats3
"Working exceptionally well"
"No evidence of disease in almost 12 months"
"Responding well"
AND best of all "grateful"
I love your post -- in between the side effects you have "sprinkled" so many good thoughts I will hold onto them for my encouragement for today. Thank you. And may you continue to be grateful for many more years! Yes, we can survive!!!
Hi - I'm new here. Diagnosed with Lobular MBC -- mets to abdomen
Tamoxifen & Ibrance 
Recently diagnosed metastatic 
