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Question for my mom age 90, has been stage IV for 4.5 years with bone mets only. Scan today showed 3 or 4 new small liver mets. She has only ever had Letrozole and xgeva, then Letrozole/Ibrance with xgeva shots monthly. I am trying to brace for the oncologist appointment tomorrow --what kind of treatment do you think might be possible for her next? ER/PR+. Her2-. I want to give her hope --it is really important for her.
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Meghar, I'm so sorry that your Mom is dealing with some progression. In her situation -- bone only until some new liver lesions -- the next choice of tx would often be the oral chemo, Xeloda. I'm not an onc, but I'm thinking perhsps a light dose -- I.e. 2000 mg/day total -- and a newish dosing schedule of just 1 week on/1 week off, to minimize any SEs. Of course, much depends on her overall health and strength.
Please let us know what her onc recommends, and keep an open mind to a second opinion, if needed.
Hugs, and good luck
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I posted this on my own thread but it's pretty quiet.
I guess it's just overwhelming giving all these tests and no diagnosis yet. Different from my initial diagnosis which was cancer as soon as I saw the mammogram picture...
I've had a bad chest cough for months and many tests.
I still have no diagnosis and am in some discomfort with breathing and coughing.... we are
hoping the flixotase im huffing will help calm the irritation. over the last weeks I've had multiple GP visits, a consultation with my oncologist, a blood test, chest X-ray, 3 CT scans, spirometry test, coming up tomorrow another spirometry test, bronchoscopy the next day, then a visit to the respiratory specialist next week- hopefully with staging/ a diagnosis, also have a mammogram and as of today, I've been referred to see a gynaecologist about cervical issues.....lungs- left not inflating properly, but no signs of calcification, infection, no inflamed lymph ( this is good). Left bronchial blockage - need to take samples to decide on a remedy- possibly breast/ or lung cancer.
Heart- good
Liver, kidneys and other organs - good ( tho liver enzymes v. High)
Lady bits- TBC. Thickened lining and irregular heterogenous appearance...gynaecologist wil need to take samples and check fior cervical cancer.
Hoping for an easy resolution to all this.
Thanks for reading
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Hi, Emily. I'm sorry you're having concerning symptoms and such a hard time getting a proper dx. Hopefully, none of what's going on turns out to be mets or lung cancer. The only suggestion I have, assuming you're in the US, if you aren't already at a major NCI-designated cancer center, is that you consider seeking a second opinion at one of them. The reason I'm suggesting this is that they are extremely thorough, plus all the various specialists you need will be under one roof or on one campus. These specialists are used to working together and will all have access to your records quickly, which should speed things up for you. Here's a link to them: https://www.cancer.gov/research/nci-role/cancer-ce...
You mentioned 3 CTs. Were those simply different areas, such as chest, abdomen and pelvis? Has anyone suggested a full body PET scan or a CA27-29 (tumor markers) test?
Please keep us posted! Deanna
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Hi Deanna.. thanks for your reply. I'm in New Zealand.
My first cancer diagnosis was so quick and simple and I went in to staging and treatment straight away.
I am attending the same hospital which is big and well resourced. All the specialists are there.
The main difficulty is that the techs can't tell me anything,. I have to wait for my doctors to meet next week and then my consultation after that. In the meantime I'm quite unwel with this respiratory thing.
The first CT was of my chest, no contrast. This Identifies a shadow round my left bronchial tube and partial collapse. The second and third CT were the chest and abdomen using the contrast solution. Gave us more info about the lung problem, and identified the gynaecological problem.
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Hi all,
So a few years before my cancer diagnosis my mother went through breast cancer, similar to mine but I have the gene mutation and she does not. Anyways, she was just diagnosed with a recurrence to her bones, localized in one spot. Her doctors are planning to start radiation right away and then a more aggressive hormone therapy pending more scans. What else can I expect for her in the next few months? Is this it, will she just live it and constantly be on the lookout for more symptoms?
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Hi, Stephanie ~ I'm so sorry about your Mother's re-dx. The good news is, it sounds like she falls into a very interesting diagnostic category -- something called oligometastatic disease, which means her mets is very limited. In most cases, there is an excellent prognosis for this form of mets, meaning it can often be treated to get her back to NED for a very long time. You may want to search for the term oligometastatic bc both within the discussion area and in the main informational area of BCO. I'm sure you'll find many encouraging posts and information.
Good luck to you both, and do keep us posted on your Mother's tx. Hugs, Deanna
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mom - I think in the case of brain mets possiblity, no news is good news. I.e. We need to get you on steroids and deal with those suckers asap and btw stop driving. They was basically my Dx, 40 minutes after the MRI. Now you could still have mets in a less importantly are like skull. But I think they'd be dealing with brain mets more impatiently
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I dont know that there is a simple answer to this, but I'm throwing it out here.
Can liver mets pain come and go? I've been experiencing some discomfort on my right side for awhile now. It comes and goes and hadn't thought too much of it. Sometimes it hurts when I sit a certain way. Other times it just comes out of nowhere and lasts for awhile and then lets up. It's not terrible pain but its uncomfortable if that makes sense.
So can liver pain come and go?
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Tangandchris, it's my understanding that liver mets do not hurt, unless they're quite advanced (e.g. been dealing with liver progression for a long time and liver is failing), which is not your situation. A far more plausible concern would be gallbladder because that pain does come and go, and is often related to what you've eaten.
I would probably start with your PCP and rule out gallbladder issues before worrying about anything else.
Hope this helps. Deanna
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Tangandchris, I agree with Deanna that there is probably a non-cancer explanation such as gallbladder trouble. However, do be on the safe side and talk to your PCP or Onc who may order an ultrasound to start with. My own experience was that the liver pain did come and go for some months before I was diagnosed. My liver enzymes were in normal range and my liver was not failing, yet I did have significant mets. Not to scare you, but to encourage you to follow up.
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thx to you both!
I have my MO appointment in a few weeks so I will discuss it then. I had a scan about a year and a half ago for elevated liver enzymes. At that time all was good, but there was a cyst.
Anyway I'm going to do my best to not blow things out of proportion.
🌷
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Hi, I am starting my annual diagnostic oncology/surgeon checks. I have had pain for 18 months on my affected (reconstructed) side and immediately sought out an appt to follow up when the pain started in the spring of 2016. I was told to take ibuprofen for 10 days and to call back if the pain persisted, which it did. I had an ultrasound as next steps. Nothing abnormal showed. The pain continued so I called my reconstruction surgeon's office as well as my mastectomy surgeon. My mastectomy surgeon recommended occupational therapy and chiropractic care. I returned to surgeon in the fall (2016) with the same problem and was referred to the pain clinic. At that time I had a br MRI as well. All normal. At the pain clinic I had 3 nerve blocks and 3 months later a nerve ablation. The ablation helped some but not for very long. This spring I started with the chiropractor again getting a little relief for a few days. I was also having hip pain at this point which I attributed to the aromatase inhibitor I was taking ( I have joint and muscle discomfort all over since starting the AI). Fast forward to now. The pain is worse so surgeon ordered mri which showed a broken rib in close proximity to where my tumor was in 2013. He has recommended a PET scan but needs to coordinate with my oncologist. I am very concerned. I have 2 lab values that are out of range, alk phophotase (low) and a/g ratio (high). Now it is a waiting game for the two doctors to consult and decide what tests to run. Has anyone had this experience or words of wisdom. Totally feeling deflated and scared. Thanks in advance.
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just thought I would update people. I have been expending Vertigo for a couple months now. MO ordered an MRI. I have a brain cyst on the pineal gland. Typically they don't cause problems but that may be the issue. They are common but rarely grow. They wonder if it's from the sudden hormone change from the tamoxifen. Whatever the case is, it's not brain mets. Thank goodness. But my suggestion I should to always get it checked out. You never know
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Georgie, it may be that you have bone mets if you broke a rib without actually doing something to it like falling. But there are many women who have bone mets that have been around for a long time. The two tests you mention are liver function tests, but unless you're really out of range and it's likely other liver function tests would also be out of range, I really wouldn't worry about it.
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Georgie - the rib pains are not necessarily bone mets. I too was experiencing pain in back & sides right under and in my ribs. X-ray showed left rib fracture or "possible lesion. The pain persisted and since I had not done anything to break a rib and my cancer was on left side I asked for PET scan (Nov 16). Scan showed no sign of cancer (except my thyroid lit up - which also turned out to be benign based on biopsies).
I still have the pains now on both sides and was also having pains in my left armpit and collarbone areA. Last week was another 6 month follow up so my onco agreed to an MRI and it showed nothing suspicious. She feels it may be scar tissue build up
Under my arm as I no longer have been doing stretching exercises. The other pains may just be side effects of AI and arthritis. The rib fracture was not even mentioned on my PET scan - oddly. Because I also had radiation to my left side - that in combination with the AI pill may have weakened the ribs which is why the fracture appeared last year.
I guess I'm saying - don't go to "the dark place" and assume the worst - it may be nothing major. But DO follow up and go with your gut and what your body is telling you. If PET scan will put your mind at ease - demand it.
Sending pisitive thought & prayers your way.
Candy
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My mom, who is now 83, was diagnosed with breast cancer 17 1/2 years ago. Last September after having pain in her back that wouldn't go away, the doctor gave her a PET scan which showed she had bone mets/Stage IV. The cancer is only in her bones but it is in many places. The oncologist put her on a drug regime of Femara and Xigiva for six months but found the Femara was not effective. Also, she had many treatments of radiation for pain.
Since the Femara was not effective, she is now on Embrace and Flaxocil. With the Ebrance she has gone from 250mg to 75mg because it made her too tired and wiped out her white and red blood count. Initially, for the first two months, she was handling it okay.. But now the issue is -- she is tired, weak, sits in the house most of the day and sleeps. When I hear her voice on the phone, because I live away from her, it is so weak. On top of that, she needs to be on oxycodin for pain and takes them three times a day. I'm not sure if the drugs are making her better or worse and I'm not sure what to do or who to ask. The doctor said that he felt the drugs were effective because her recent bone scan showed that there was no new growth - so that was good, but her overall quality of life has gone way down in the past two months. If the cancer has not spread and is the same, why is she suddenly so weak? Does anyone have any suggestions or advice? Thank you
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Hi Mom_sweetangel, it is unfortunate that in order to live we must take these drugs that can and do interfere with our quality of life.
The choices are for your Mom are to stop treatment and enjoy as much as possible what time she has left or ask her onc to change her treatment so her quality of life can improve. This is always a gambol as the next treatment could even make her feel worse or not work at all.
I can't tell you or her what she needs to do, I can only offer the above suggestions and hope things improve so she can be more like her normal self.
Love n hugs. Chrissy
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Mom_sweetangel, I'm guessing that you mean your mom is on Faslodex and Ibrance. (These drugs have such strange names.) She could ask about dropping the Ibrance and staying on just Faslodex. Ibrance is a targeted therapy intended to extend the time that an anti-estrogen, Faslodex in this case, works. But Faslodex alone is a valid treatment and some women do well for years on it. According to my oncologist, Faslodex has the fewest side effects of the usual anti-estrogens. Ibrance, on the other hand, is known to cause significant fatigue for many people. Oxycodone can cause sleepiness. So they need to figure out what is likely causing your mom to feel so poorly.
I hope your mom knows that she should talk to her oncologist about how she is feeling. Besides discussing treatment choice with her oncologist, your mom might ask to speak with a palliative care specialist in order to find the best ways to treat her pain and tiredness. Also, if she thinks depression is playing any part in this, she could talk to the social worker or psychologist at her cancer center. And finally she could see someone who specializes in geriatric oncology; that is, in meeting the special needs of older patients on cancer treatment. For example, in older people, drugs can behave differently and there may be health issues other than cancer. You can probably help long-distance by looking up what resources she has and what specialists are available to her. A nurse navigator at the hospital or insurance company might also help.
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Hi, just wanted to thank you all for your responses to my post. I had a pet/ct today and have the report already from medical records. Thankfully it showed no hot spots any place else in my body. It does show hyper-metabolic activity in the area of the fractured rib and recommended bone scan to rule out solitary bone mets. Basically the same thing the br mri impression stated in regards to recommendations. I am standing by to hear from the doctors. Appreciate all of your feedback. Best.
Georgie
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Thank you for taking the time to respond to my email. I appreciate it.
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Georgie girl
Great news! It's nice to get good news for a change & to share it with everyone. Sending Continued good thoughts & prayers. Hugs, Candy
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I had my appointments today and MO and BS are recommending a bone scan and chest CT. Possible MRI on my back depends on bone scan. So here goes the rollercoaster again.
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Hi,All of ypu my mom was diagnosed with stage 3 tnbc in 2015.Her doctors not performed any scan at the time of diagnosis only mammo.Now in june this year she had problem during passin urine and passing bowel so her doctor ordered a cat scan.Cat scan captured her lungs and showed a single 4*3mm nodule.Now doctors are not doing any type of scan.They said they will rescan it after 10 months. Is this wise.She is tnbc.I am terrified.See my profile for her diagnosis.
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Katie, b9 lung nodules are very common. So generally they just recheck it to see if it is changing. If it stays the same, it isn't a metastases. If it changes, ie grows they may want to biopsy it.
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civi recently my mom have developed a tickle in her throat from past one month and cough 2 -3 times a day.She cough one time at night.No other symptoms but she need to clear her throat often.
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Hi i have Stage IIa Breast cancer..
Now there is concern that it is now in my hip as well, I'm going for a bone scan Monday... biopsy thursday..
If it comes back that it is cancer now in the bones... that means I jump to Stage IV Breast cancer...
I don't feel like i am getting a clear answer from my MO & Breast Surgeon.... how I can jump to stage IV when my nodes were clean??
Would love your thoughts!
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Tina marie ~ I'm so sorry there's a concern about your hip. To answer your question, bc cells migrate from the breast via both the lymph system and blood system. If you have a copy of your surgical pathology, you might want to reread it and see if there's any mention of lymphovascular or vascular invasion. That might provide a possible clue.
Why are they doing a bone scan? Have you been in pain, or have you had either a PET scan or CT scan showing an area of concern?
Hopefully, your bone scan wiil be clear. Please keep us posted. Hugs & prayers that this is nothing more than a scare due to something that needs to be followed up because of your bc hx. Deanna
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Katie, I'm so sorry about your Mom. I'm not sure I totally understand your post. Did the CT scan that was done rule out any problem in her bowel area? Is she still having the problems that sent her for a scan? Was that dx'd as something specific, or was she at least referred to a gastro doc?
As far as the lung nodule -- it's not uncommon to have something like that show up on a scan. Often it's what's termed an "artifact" -- leftover damage from maybe having had pneumonia, for example. Do you know if your Mom has ever had pneumonia? I do think a wait and watch approach is logical. I'm just a bit surprised that they would wait 10 mos. for a follow. Perhaps there's a good reason for that (maybe the size is just so small that it would be hard to see a difference sooner?), but often 6 mos. is more common. Short of a possibly difficult and/or unnecessary biopsy, watching for any change is pretty standard.
Depending on why they recommended waiting 10 mos., if you or your Mom aren't comfortable with the recommendation, you can ask about doing it sooner, or she can consider getting a second opinion, ideally with an onc who specializes in TNBC. These are more common at the larger NCI-designated medical centers.
Hope this helps, and please keep us posted.
Hugs, Deanna
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Thank you Deanna.. Well here's my story...
In June I went to my regular doctor's office because I had pain in my hip and had been limping for 3 weeks at that time.. but at the same time I was taking care of my elderly mother-in-law in end stages of metastatic lung cancer so I just figured I pulled something. DO (doctors office) gave me an order for an X-ray, but i had to wait another month as my MIL was getting sicker. After she passed I had a day off in early July.. i walked into the imaging center and showed them my order for the X-ray and told them i was due for my mammogram. They saw me and discovered the breast cancer. they said the hip X-ray was fine.
So 2 months later after being in the care of my Breast Surgeon and Oncologist.. my Internist decides to call me one day to check in on me and see how i'm doing since he knew what I was going through... I told him good.. managing as well as can be expected, but that I was still limping, even tho the X-rays came back fine.. he told me to give him a half hour so he could check them out again, he'd call me back. a half hour later they wanted to see me the next day for eval, where they set me up for an mri.
I got my results of that yesterday the Oncologist and their radiologist tell me the are seeing three areas in the hip that are under 1cm each that are very suspicious of cancer.. biopsy and full bone scan next week. It was the limping that started all this!!
I just checked my surgical pathology and it states: size of tumor, GRADE 3 AND Lymph-Vascular Invasion - Present
What does that mean?? They told me it wasn't in my lympnodes. Does any of that make sense?
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