If you are not Stage IV but have questions, you may post here
Comments
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Hi GK, so sorry to hear that your friend has been dx stage IV. There are many factors that go into determining what treatment she will receive the most important being the cancer status i.e. ER/PR+ or - and Her2+or - . Without knowing these we cannot give you much idea what her possible treatment would be.
Love n hugs. Chrissy0 -
First off want apologize for having to ask you ladies this question. I have tried to find the answer in my own and even asked my mothers onc but haven't really had much luck with an answer. My mother has had stage 4 BC since Aug of 2012. She did great with her intial chemo A/C and then felt great on Arimedex till progression in her liver 2; 4mm areas and 3 areas in bones. The end of Sept she started Faslodex, since then (total of 4 injections) she started having horrible pain in her left hip which started 4 days after the first injection. As time has gone on she has extreme fatigue daily (enough that she can only walk to the living room) nausea and vomiting, no appetite. She has lost 20 pounds. She has stopped the injections last one 27 days ago.
So my question. For those of u who had horrible side effects on faslodex, how long till u felt better. I know the half life of this drug is 40 days. Just want to give my mom some hope. In 2 months she went from working full time, working out and riding her horses to lying in bed. Not good QOL.
Thanks again for ur time. And hope u all enjoy ur Holiday.
Jennifer
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Jennifer, there is a thread for people on Faslodex. Although I know it is in the only Stage IV section, since you are posting for your mother who is Stage IV maybe it would be okay. If you don't feel comfortable posting there or others don't like it, you can at least read the posts from people taking it. I don't take it so I can't help you myself..sorry.
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HVV- I had the same issues involving surgery. My docs would tell me that I may not need surgery while I was in treatment and I didn't really understand why they were saying that. Now I realize they were saying it because if the chemo didn't get rid of the cancer in my nodes that couldn't be removed by surgery, that there would be no use for a bmx. Well, I had a complete response from chemo as far as they could tell from the scans, so it became a question of just monitoring my breasts, or take em off. I was fed up with them, cancer in both breast over a 10 year period so I decided to have the surgery, plus radiation, which was also debatable in my situation. I am glad I did all of that, but I do wonder sometimes if it would have been better not to have the surgery and radiation. I have severe tightness and it certainly affects my quality of life, but I just could not go through another lump in by breast if that were to happen. So I feel I made the right choice for me. I also appreciated that they went though the breast tissue they took very carefully and did not find one bit of cancer! That made me hopeful that the cancer was actually gone in the nodes that they didn't remove. As we all know, scans don't always show everything!
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Chrissyb
While i was massaging my wifes head (scalp) and while pressing hard , a few spots felt tender
is this normal or could it be skull mets?there are no other symptoms involved
plz guide
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Hi Many, does your massage cause pain or discomfort in those spots? If so then they need to be checked out as it is possible that they could be mets but if they are not painful when massaging I would hazard a guess and say that they are possibly just some changes caused by treatments.
As always, the best line of action is always mention these things to her doc at the next visit or if you feel it is urgent, a phone call is in order.
Hope this helps.
Love n hugs. Chrissy
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CHRISSYB
THEY DO NOT CAUSE PAIN WHEN MASSAGED ,THEY ONLY CAUSE PAIN WHEN PRESSED HARDLY
PLZ GUIDE
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Many, it is worth mentioning them to your wifes doc at the next visit just to make sure he/she is aware of them. In the mean time keep a check on them yourself and if you notice any change then please ring her doc.
If they are mets, pressing on them hard is not a good idea so I would just gently massage over those areas while checking for any changes.
Love n hugs. Chrissy
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Chrissy Today when I presses hard on scalp and skull ,it doesn't hurt .i tried various Spots but none of them were sore and none hurt
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Many, I doubt those spots are mets, just sensitive areas. It is more likely that your wife has developed them due to the treatments and what you were feeling as squishy are just areas where fluid has gathered.
I would still mention them to your wife's doc at the next appointment as he/she needs to be aware of everything that is a change from the norm.
Love n hugs. Chrissy
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Re: lumps not there before....I just wanted to share that my mother kept remarking on a new "lump" or bulge under her arm and on the front of her chest but not near the mastectomy scar. I could see changes in her shape even with her clothes on. We were worried about tumor regrowth, lymph nodes, or lymphedema. We did not think it was a seroma as she had a seroma right after surgery and it was smaller and a different shape. The new "lump" was large enough that the medical oncologist actually thought she had reconstruction (saline implants) -(which she never had as she is 87). 3-4 weeks later my mom's entire under arm and chest area 'lumps" were so pronounced that she was larger on the mastectomy site than the other side (where breast was still intact). At her routine 6 month surgeon checkup, the surgeon said immediately that it was a seroma -- long story short is that she had well over a liter of fluid drained. Imagine the size of a one liter soda pop bottle under your skin. The surgeon knew immediately that it was not a tumor, not lymphedema, but a seroma. This can happen even months or years after a surgery. It is not ominous (his words) but should be drained if it is large. So going to the right doctor asap is worth the piece of mind. She had it drained in a half hour and was fine. It does seem like it can come back though. I am only sharing this story to highlight that 1) sometimes even huge problems are benign and 2)seeing a doctor sooner than later is still less scary than waiting, thinking, imagining and worrying. If it is a mild problem, you will be relieved. If it is a more significant problem, you will be taking care of it sooner which is always better.
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Oh wow meghar! Glad everything turned out ok! That must have been very scary and uncomfortable for you mom.
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thank you for ur help. I have read through the faslodex thread, and it seems like most people don't have as horrible side effects that my mother is having. I really would like to post there however want to respect the others who ask that I don't post. I just hope it gets better for her soon. Hope u have a great holiday and thank you for ur time.
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Daughter there is a thread for stage IV family and care givers.......check the main menu. You are welcome to post here as well if you have some questions or queries. I haven't used Faslodex yet but I'm happy to research for you.
Hope your mom feels a little better soon.
Love n hugs. Chrissy
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hi all,my GP ordered an ultrasound of my lump/swelling on my inner elbow. Results normal muscle and fatty tissue,said if it gets bigger to call,get an appt and we'll go from there! Told the receptionist that it had been hurting the past few days,she said,well if it gets bigger,call! Arrrrhh,still no answer,but if the past is any indicator it will get bigger. In fact,I think it is bigger! Tomorrow,I am scheduled for EKG,Echo and heart blood work to see if I have heart damage from chemo. I think it is just to rule out because of shortness of breath at times and lung function is good. So I'll deal with this next week! I have no idea on what to ask for next x-ray,MRI? Is there any use asking for biopsy if US showed normal tissue?
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The good thing is, cancer is pretty rare in muscle tissue. especially bc. i dont know why but it is. cause i had been worried about the same thing in my arm. they were more concerned with me, that it might be a blood clot. just regular lymphedema. but it doesnt mean it couldnt happen, so nice of them to check you up with ultrasound tho, instead os saying you worry too much, like my ol team does.
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hi Kathec,it's taken 2 yrs to get the ultrasound. Since it has gotten bigger,GP finally agreed to do ultrasound. The Ultrasound tech suggested getting x-ray in case it's something on the bone-pushing tissue up?
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i pmd you belleeast, ok?
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yes,got it and replied:)) thanks for suggestion/info.
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I am triple negative and have been NED since my double Mastectomy March 2011. I had increasing pain in my shoulder, neck and back. But mainly my shoulder and neck (at the time). Onco ordered a PET. I know it was the pre-holiday season, but I had to call back after 4 days and no PET scheduled. Finally got a PET. I am severely claustrophobic, but made it through. Shoulder and neck were fine.
"Heterogeneous metabolic activity in the spine. The most
prominent focal area of activity is seen at L3 vertebral body anteriorly
maximum S U V of 3.7 however without any definite anatomy correlate."Onco called me himself New Year's Eve after hours, said he ordered an MRI for a better look, that it might not be cancer, but if it is we will start with radiation since it shows to just be in the spine.
I am not a patient person when it comes to my life. I have 2 boys that depend on me, one of which is special needs. I waited until late morning Jan 3 and asked when my MRI would be after I told them the Onco called me after hours on New Years Eve and that he told me he had ordered one. They saw no orders for MRI and said the doc probably would just talk to me about scheduling one during my appt with him on the 14th. I knew doc was going out of town for a week starting the 3rd, so that is why I called. Maybe I am just being impatient, but really?!?! Why would the doc call me himself after hours on New Years Eve to tell me that we would schedule an MRI during my visit with him in 2 weeks. I asked them that didn't it make sense that he would want it done, and results back, BEFORE my appt. with him on the 14th so that he would have the results. I told them to dig further for the orders and of course never heard back from them.
Anyway, I went to PCP since shoulder didn't show mets and I have rotator cuff injury/frozen shoulder and he has ordered PT to start soon. I am glad to have that addressed. I had been using a heating pad but since seeing him I have been icing it, which helps too.
So, either the reduced rotator cuff pain is just making the back pain more noticeable or it is getting worse. I feel radiating deep pain in my leg and butt now.
I really like my Onco, but I've had repeated issues such as this with the other personnel in the clinic.
I am trying not to worry, about the upcoming MRI or the cancer, but it isn't so easy as you all well know.
I guess my question is, how likely it is an infection of some sort versus cancer. I have tied myself in knots by hanging out with Dr. Google.0 -
Hi ForMyBoys........yes waiting for tests and results can take forever and none of us are patient when we need answers. I'm so glad that the shoulder showed no mets and icing is helping with the pain of it being frozen ...........PT will definitely help with that as well.
Even though you want answers ASAP, the delay in getting the MRI will not make any difference to the out come be it good or bad.
Here's hoping the MRI comes back clean for BC.
Love n hugs. Chrissy
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I know...it just seems like I can feel it spreading as I wait.
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ForMyBoys, our imaginations are wonderful things but when it comes to something like this they somehow turn rogue and torment us.
Yes I know you are worried but do try to relax a little as the stress will only make you feel worse.........having to wait that extra week or two in reality will not make any noticeable difference to treatment or outcomes and I know you are aware of that fact......it's just getting lost amoungst the meanderings of that rogue imagination.
Deep breath and try to keep that imagination in check by using it to do something else.
Love n hugs. Chrissy
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Hi all, I hope you all had as nice a festive period as possible.
I have a drugs question. My mum (diagnosed 1 year ago with mets to bra in, bone, lung and liver) was on zometa every 3 weeks for her bones but the insurance stopped covering it so it was stopped. The doctor didn't suggest her taking it anymore. But surely since she has bones mets it would be good to carry on?
My concern is that perhaps the doctor is thinking its just not worth it at this stage? She is still on chemo so they haven't given up hope yet of keeping the c at bay.. and we are grateful for this. But I am confused. Mum tells me she "doesn't need it anymore"... I worry she hasn't been given the full picture.
Anyone else been on zometa and stopped since it, or an equivalent, just isn't needed anymore?
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Hi Papillon, Zometa is a bone building drug which is good but it has been proven that too much of the bone building drugs can be detrimental to bone health by making them very brittle. Perhaps this is why your moms docs have discontinued giving it to her as they feel what has been given has strengthened her bones but not to the point of brittleness.
Love n hugs. Chrissy
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For those of you who have had many CT scans - I have a question. I had a followup scan which showed the lung nodule is more conspicuous but not any larger than last time. Good news! However, the first paragraph of the Findings says : "On Mediastinal windows settings are grossly enlarged hilar or mediastinal lymphadenopathy is noted." Then nothing else is said about it.
I, of course, have looked it up and don't know whether or not it means anything. I have the question about it in with the doctor but haven't heard back yet. Can anyone tell me what this means and if it is something that I should get another opinion on?
As always, thank you for your help. Namaste'.
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wramithx2, my understanding of that is that the lymph nodes in the mediastinal area have been noted as being larger than normal. What that means to you and your cancer should be discussed with your doc as they may have been that way for a while. If that is the case then for you the report could be just a notation.
Hope you hear from you doc soon.
Love n hugs. Chrissy
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I had a mastectomy October 2012 followed by Adria/cytoxan and 12 weekly taxol. I finished chemo in May, and rads in August. I've been on arimidex since August.
I've been noticing a tiny lump just above the mastectomy scar. I still have minor pain post rads that I figure may be where it's still healing inside. I lost all the skin when I had rads. It was actually much harder on me than chemo was.
Do you think this could be cancer that was missed, or could it be scar tissue?
I had a clean bone scan last week, and in June I had a ct scan, pet scan, & bone scan. All were fine. I will be seeing my MO on January 27.
Paula
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Paula it is more than likely just scar tissue but I would make sure your doc is aware of it at your next check up.
Love n hugs. Chrissy
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Thanks Chrissy. That's what I'm thinking too. I will be sure to show it to her.
Paula
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