If you are not Stage IV but have questions, you may post here
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tlundy - Just my 2 cents (I'm not Stage IV - but dx Stage III). I've been taking Effexor for about 3 months now. I take Arimidex and my MO monitors my hormones and still very much in menopause. It helps my mood, but doesn't do much for the hot flashes - though. Still get them all the time - but - that helps me know the Arimidex is doing it's job. LOL. Hope that helps!!
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tlundy, I'm so sorry about the depression you're experiencing. I have never taken Effexor, but I've never heard it associated with a bc recurrence either. I wouldn't worry about taking it if you need it. OTOH, I am very much pro natural healing and taking only meds that are absolutely needed, so the first question I would ask (and I am not a doctor, so just asking as a caring bc sister ... ), what has you feeling depressed, and is there anything you can do about it, including simple things like getting out in nature more, getting more exercise, meditation or music? I do believe a lack of estrogen can contribute to depression, but I'm not a fan of simply taking a med to cover up other possible things going on. JMO, but if you feel you truly need the med, I don't think you need to fear it increasing your risk of recurrence. Hugs, Deanna
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tlundy- Personally, I have embraced antidepressants and have no problem taking them. I tried years ago to go off of them and got no enjoyment from anything. I am not a person who seeks pills to cure everything. The trick is to find something that works for you. I have known folks that took Effexor and benefitted. I am unaware of antidepressants causing a recurrence of BC. I think exercise and a healthy diet are partners with antidepressants in helping depression.You live in the South, so lack of sun is not an issue.
Best, MJH
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hi,
I’ve posted about this once before but my concern has returned, iam almost 5 years out from diagnosis and I have small lump underarm just next to my implant. I found this over a year ago and had an ultrasound which didn’t show anything suspicious so I forgot about it, but I recently realized it’s still there and I think slightly bigger, it’s definitelu easier to locate now. Could my results have changed? I had a pet scan in December and all was clear, would it have shown up there if it was cancer?
Thanks so much for your feedback.
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Stephanie-it would have shown up in the PET scan. You are good to go, my dear! Best, MJH
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I am not sure if this is the best form for I am new. My wife is recently diagnosed with lobular breast cancer. We are pending scan results but there are indicators the cancer has spread. 2 oncologists agree that the cancer is not highly agreesive and the markers make it the most receptive to treatment. I am terrified, worried, and distraught. My dad passed away almost five years ago with cancer and can't believe this advanced cancer devolped in my wife. I am thankful there is a silver lining with the type of cancer she has. The mentioned anti estogen meds and a shot to stop menstruation. My wife is 43 and our kids are 16 and 14. Any advice to handle the stress of all this? Any words of hope? Thanks
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Stephanie, I think if I were you I would ask your onc to have a radiologist go back and specifically look at the area in question. In most cases, MJHJAN is correct. However, my only thought is that there is a threshold below which even PET will not pick up certain size lesions or lymph nodes. I doubt very much something would have changed significantly between December and April, but it would probably be worth telling your onc what you've observed and asking them to recheck both your lymph node and the PET imaging-- if only for your peace of mind, especially since it sounds from your description like it was extremely small and may have grown. But also keep in mind that any infection in that general region can cause a lymph node to swell, so probably, as MJHJAN suggests, no reason to worry. Hugs.
Jeremy, I'm so sorry about your wife's bc dx and the concern that it may have even moved outside the breast. Hopefully, that won't be the situation, but even if it is, just know that newer meds are giving us many years, during which time we have to trust that there will be even more breakthroughs. The only advice I can give you is, be sure your wife is in the hands of docs who specialize in bc. That can make a big difference in everything, from the course of tx, to other available support services (such as having a physcologist on staff), to outcome. Plus, knowing her docs are bc specialists will help you both not second guess their recommendations and trust their advice and care. Also, where you are at the moment, not having a complete dx and waiting for the proverbial other shoe to drop, is an especially rough place to be. Once all the test results are in and your wife begins tx, things usually get a bit less stressful. And you've come to a great place for support. Stay with us here, but also look at this thread for even more support from those in similar caregiver roles. https://community.breastcancer.org/forum/16/topics... Please be sure to keep us updated!
VL22, so glad things all worked out for you. Thanks for letting us know! I hope your experience will prove helpful to others. Deanna
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Hello:
I've had cancer on the left breast, single MX, had surgery, rads, chemo, last rads were 01/31/17. I tried to eat healthy, avoid red meat, and sugar. The only thing is since middle of last year I took in 10 cats and spent lots of time cleaning and did not sleep at least 8 hours. I do not know if lack of sleep and stress cause me to recur but I just examine my right breast and there some swelling near my armpit. It's suddenly there bc I looks at the breasts everyday. I just had right breast cyst removal in July 2017 and ultrasound done at the time. The BS did a physical exam in November 2017 and recommend mammogram. However I was fearing radiation from mammogram and kept delaying it. If anyone had inputs I would appreciate. Thanks.
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Hi Houston. Sometimes we need to get past the fear of the small amount of radiation that comes from a mammogram of for no other reason than to put our minds to rest. While it is possible that you have a recurrence it's also possible that the swelling is lymphedema as that is something that can seemingly just appear.
Talk to your doc and ask for a referral for proper assessment.
Love n hugs. Chrissy
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Jeremy, We are very sorry for all you and your wife are going through. The worry is really overwhelming.
We're all here for you!
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I am writing on behalf of my friend with IBC. She was DX in the fall of '16, chemo , surgery, but after surgery the cancer returned around the MX scar, so she got more chemo and radiation. While at radiation the cancer started to move to the other breast, biopsy confirmed it was now triple negative and she is back on chemo but still has visible cancer. Only bone and ct scans done and all clear. They have told her that they are not going to operate on the other breast. So is she still considered stage III, just locally advanced and non operable?
My question is if her cancer is TN now but original was HR+ should she still be on hormone blockers or not? And should she be on bone meds since she is so high risk for mets?
She also had Oncodeep done (similar to Caris and Foundation One) but she has already become resistant to one of the drugs (it worked great in the beginning). The report is suggesting Metformin an Rapamune (same class as Afinitor but a lot cheaper). Has anyone had any experience or maybe even success using non conventional breast cancer drugs after cancer sensitivity testing? She is in Estonia, they have universal health care but a lot of the newer drugs are not covered, so the cost of drugs is crucial.
Thank you in advance for any insight you have to offer!
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Inks, I’m not an oncologist but I think that chemo will treat both TN and hormone-powered cells, especially if the growth rate is medium or fast. It just kills cancer without making too fine a distinction, you know? A resource you and your friend may be interested in reading is the NCCN guidelines for breast cancer, the IBC section.
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Thanks Shetland Pony, in her case unfortunately chemo has not been too effective and she is grade 3. Her cancer persisted despite the neoadjuvant FEC and Taxotere. She already failed on Halaven and navelbine. She did not tolerate Xeloda. At the moment she is on Carboplatin and Abraxane but they do not seem to be working either.
I tried to make an account at the NCCN to see their recommendations but I can't seem to even make an account. I'll try again tomorrow.
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Oh, wow. Did the genomics test look for a Her2 mutation (different from Her2 positive)? That could point the way to a drug like neratinib. And did the doctor order FISH and CISH to double-check for Her2 amplification? That would bring in the Her2 drugs like herceptin. Can she ask about trying the addition of an anti-estrogen? Some of these are not too expensive and the side effect profile is usually not too bad compared to chemo. Faslodex might be best. Otherwise an aromatase inhibitor or tamoxifen. And maybe a targeted therapy like Ibrance or Afinitor? Tumors can be heterogenous, so one biopsy may not tell the whole story. Are there clinical trials available to her, say immunotherapy such as keytruda? I'm just throwing out some ideas, here; I do not know tons about IBC. Will they consider surgery later if they can get it under control?
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She was originally on Tamoxifen. But they did try Faslodex with Arimidex (she had to get the zoladex to be in menopause) too, but during it her breast got worse so they stopped. So that's what's puzzling, should she be on some form of hormone blocker? She paid out of pocket for the cancer sensitivity test and one of the meds that would work for her is Afinitor, but I be it's the cost why she is not getting it. Metformin and Rapamune were options too, and they are way cheaper, Rapamune is also an MTOR inhibitor just like Afinitor so I'm hoping she could try that. She is going for chemo on Wednesday so I hope she can talk to her doctor.
Her report has the part about genes, and somebody handwrote next to ERBB2 - HER2. But the report must have been in color and I only have the black and white version since it talks about highlighted and non highlighted genes. So I have no clue what that means. But I'll tell her to ask her doctor if that would give her a treatment option.
I already checked the clinical trials for her and there are none that are recruiting. And she has been told that she will not get surgery. Which I do not understand again.
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Jeremy.....I'm so sorry this has happened to your wife. As a Stage IV patient with extensive bone mets, diagnosed de novo (Stage IV from the beginning), my diagnosis was also a shock. Now, eighteen months later, I've worked through the various stages to acceptance. I think I have, anyway, it doesn't happen overnight. The truth sinks in very slowly, in stages. I was in denial for a long, long time and didn't look at the situation directly. If your wife appears to be doing this, my advice is to allow her to stay in Denial Land for as long as she needs to because it helps cushion the blow. Eventually, once she realises treatment is for the rest of her life, the reality of it will sink in bit by bit.
The best advice I can give you is to take it one moment at a time. Not even one day at a time; one moment, because your moods tend to swing wildly at the beginning.
Don't look too far into the future. The future is in your imagination and your mind can conjure up all sorts of worries that might or might not ever happen. Live completely and utterly in the present.
Be kind to each other. Give each other space and give each other support as and when needed. There might be times when your wife needs you desperately to be there with her and there might be times when she wants to be alone.
I cried a lot. If your wife does this let her. Tears are very healing. Sometimes she might need you for comfort and at others she might feel like a wounded animal and feel the need to be alone with her tears. I often go off on my own to have a little cry. My future is no longer the future I thought I would have.
If your wife has the most treatable form that's obviously a good thing but you need to be prepared that treatment is forever. There is no time off for good behaviour with metastatic breast cancer. Treatments have side effects and it takes a while to adjust to them. More so, it takes a long, long time to adjust your mind to the fact that if the cancer is metastatic it is incurable. It can be highly treatable but, at this stage, treatment is for life. There will be lots of scans and doctors' appointments and she will need help with those. She will need you or a trusted friend to go with her to appointments to take notes because it's impossible to remember everything we're told at an appointment.
But I return to my main belief that what works best at this stage is living in the present moment and refusing to think about what the future might hold. Thinking that it's best to be prepared for more bad news is not helpful. If you're given bad news you will cope better if you are emotionally stronger. Be optimistic and positive - you'll have that said to you a lot. If it's said by people who have never been where you are right now, it's a superficial bunch of words that are meaningless. If it's said to you by someone who is experiencing metastatic breast cancer it has deep meaning. It means live with the belief that all will be well, find anything you can that gives you moments of happiness and go with that, but believe with every fibre of your being that you will cope with this. Believing is different from just saying "be positive". This might sound strange at the moment but in time you will probably understand what I'm getting at.
You will be given a lot of advice by well meaning friends and you'll hear the same words over and over. Certain diets will be suggested, certain foods are said to "cure cancer", people will say "if there's anything I can do just let me know". Ignore the first two but when it comes to the last one, take them up on it. Have a list in your mind of the things you need help with and delegate them. Take all the help you can get. If you don't have anything they can do for you right now, you might later. People generally mean it when they say they want to help, so let them.
You asked for words of hope. There are a lot of women who have lived for many, many years with metastatic breast cancer. Especially the highly treatable kind. I expect to live until I die from old age.
A word of advice....if it is confirmed that there is metastasis, have a look for the appropriate thread in this forum. There are threads for the kind of medication used and threads for the organs that are affected, just to name two. Join into the conversation on those threads, make yourself known. You will be welcomed with open arms, kindness and a lot of support and knowledge.
I wish you and your wife strength, flexibility and love.
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Hi all,
I have a lot of questions and may be I just have the need to share my fairs.. My grandmother (68 years old) had breast cancer in 2012. She was okay (all tests was negative until November 2017- they found bone mets, in all her bones). She started Ribociclib and Femara, she had control tests (Body scan) on 5th of April, so they now see new mets in liver (under 10mm) and some infected limph nodes of the mediastinum (again under 10mm). She had really low levels of thrombocytes (30- and the minimum range is 160) and hemoglobin - 68. So they started blood transfusion last week, now the level of the hemoglobin is around 100. She is at home now but again she is really in pain and she is weak. They said she need to start tamoxifen - 2 times per day x 10 mg (total of 20 mg).
I'm really afraid what's next? What we can expect ? Is there anything else we can try or we can do. I don't want to lose my grandmother... She asked me this morning if she is going to die? I told her that she is going to beat this cancer and she will be okay. Does anyone have the same experience?
I know that it's not good that the cancer is now also in liver and... I just want some support.
Thank you in advance!
I wish you all a lot of health!
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Hi jenjen1, my pain sounds similar. I have been dealing with it for months, I have been using cdb for pain control, it takes the edge off. At first my mo thought it was liver mets but ultrasound and liver function was normal. Bone scan was clear. My family doctor is stumped. I have a cat scan tomorrow. We don't have a pet scan here.
I hope all is well with you. Hard when we don't know cause. My doctor said he doesn't think it is anything serious that I just see cancer around every corner since I was so recently was diagnosed. This did not comfort me. I am thinking that if cat scan does not show cause then it must be from radiation.
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Good12 I'm sorry to say that yes indeed you will lose your grandmother, probably to this disease. BUT. That's not this month or even this year! How Stage IV works is you take treatments until they don't work anymore then you move on to the next treatment. And there are many treatments to try. I'm on my third and it's been five years already.
It sounds like Ibrance/Femara didn't work will for your Grandmother, but it's possible tamoxifen will work. If it doesn't the next drug would probably be Xeloda. At 68 years old your grandmother should be able to tolerate most of the treatments pretty well and have many years left.
Please give her a hug from us and suggest that she come visit us on these forums.
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Good12....I agree with pajim, as someone with bone mets. It seems the treatment your grandmother was on didn't suit her but there are many treatment options and we Stage IV patients are not terminal until we've gone through all of them. She has a long way to go. She will naturally be feeling very weak and ill right now with such a low blood count but there is quality of life once we're put on the right treatment and looked after properly. I'm the same age as your grandmother and, now that I'm on the correct treatment for me, which happens to be Ibrance and Femara, I'm feeling very well and strong. My time will come but meanwhile I'm living every happy moment as they come and making sure I keep my spirits up. Once the blood transfusion kicks in your grandmother will feel much better. Your job is to keep her looking forward to small goals and to keep her spirits up. Share little pleasures and jokes. Take her mind off it but if she wants to talk, let her talk freely without using platitudes towards her. Just listen and let her know you understand her fears. But don't let her give in. There are so many treatment options that she will be with you for a long time once the correct one for her is found.
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I am newly diagnosed IIIA this February and am in chemo. I was experiencing back pain, so I had a bone scan. It turned up minimal uptake in the 6th rib. My oncologist is calling it a strain and I will have a repeat bone scan in 2 months. I looked up rib strain and I have not had any of the causes or associated pain. I am wondering if this is what early mets to ribs can look like. My PET scan and CT scan were clear in February.Thank you.
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Hi Magnoliamon, it's very unlikely that you would have developed mets since February particularly since you are still in active systemic treatment. Even though you may not have done anything to cause a strain it's not an unusual occurrence during treatment.
Try not to let your mind take you to dark places right now as you need all your strength to get you through treatment. Your onc is doing the right thing for you in suggesting another scan in two months.
Love n hugs. Chrissy
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Thank you Chrissy. Your response is reassuring. This is my first bone scan and I’m feeling a little frustrated learning that bone scans can pick up mets not seen on the other scans. And I can’t help but wonder if this is something that was here all along. It is hopeful to hear that strains can happen during treatment. I appreciate you reaching out. Love and hugs to you too
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I had a pelvis xray and just had an abdominal CT scan. I should have results EOW. I'm feeling hopefully since its been less painful this week.
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Hi everyone, it is so nice to have the support of the people here. I finally had CT scan, got results today. A small bit of fluid causing some pleurisy and some thickening of chest wall, inflammation from radiation. That's it, no mets the only answer to the pain is irritation from radiation. I am relieved of course but wish pain would go away.
Thanks for the support and words of encouragement.
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Whew! I am sooo excited for you. The oncs don't say that rads can cause rib pain. How's your bloating? I go for a CT scan on Monday. I hope I have good results as well. I'm glad you have an answer!
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Hello everyone,
Recently about 2 weeks ago I started having discomfort around my waist line, it's kinda go down to lower back above the butts both sides and circle to the groin area. It's more bothering when I sit working but I am able to walk fine. I do stretch everyday. Went to see gynecologist and she ordered pelvic ultrasound. Then I saw PCP for a cold inflection, and she ordered lumbar X Ray. Another thing the discomfort kinda go down to my legs below the buttocks Tuesday but they come and go. Could any of this sounds like bone Mets? What does bone Mets symptoms feels like? Thank you everyone.
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Houston- Have you received results from the Xray yet? I would recommend making an appointment with your oncologist just to be sure it is not mets. Bone met pain is different for everyone, but anything that persists for more than 2 weeks should probably be checked. Your symptoms sound a bit like sciatica, which happens when the sciatic nerve is compressed. it may be that your oncologist orders further imaging studies and some blood work. All the best to you, MJH
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Houston, I agree with MJH. Sounds a lot like sciatica, but another possibility that crossed my mind is a kidney stone, or even some intense constipation going on. As MHJ said, bone mets pain can be a bit different for each of us, depending on extent and if nerves are involved, etc. But people with bone mets pain often describe it as intense aching or burning vs. what you've described. Also, in many cases, it's exacerbated by activity -- not the reverse. If you pain is coming from the sciatic nerve, see if putting pressure on the area where that nerve is located (I'll give you a diagram) helps you locate the source of and possibly relieves the pain some. But the pattern you're describing often emanates from that nerve when it's been pinched or hurt. Keep us posted on what you find out!
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Houston I think the others are right. I have bone mets and the pain is nothing like the pain you describe. The pain that I experienced when it first started was a very sharp, continuous pain exactly where the tumours showed up to be when I had a scan. I've seen others describe theirs the same as mine. I wouldn't like to say yours is not bone mets because of the position but it does sound more like a nerve compression type pain. I'm reluctant to even say that because I'm only guessing and you should get it checked it out simply because you've had it for two weeks and it sounds as if you're in quite a lot of pain.
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