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Comments

  • Tomboy
    Tomboy Member Posts: 2,700
    edited December 2015

    Hi Chrissy! Hi rleepac! Rleepac, you should come and see us at:Crazy town! Not implying you are crazy, but WE are!! Especially before tests, but also what we think of, or imagine. Then, we talk about food, or animals, or our families, etc. It's pretty fun, and the lady who started it, she is at least as kind as chrissy! I do hope you visit, all stages are welcome.

  • rleepac
    rleepac Member Posts: 193
    edited December 2015

    Thanks tomboy, I'll check it out

  • Beatmon
    Beatmon Member Posts: 617
    edited December 2015

    Bekah, have you taken your Bp sitting and then standing? This is important to know, not just a sitting or supine Bp

  • rleepac
    rleepac Member Posts: 193
    edited December 2015

    Yep, I did orthostatic vitals and there wasn't a significant difference.

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited December 2015

    You need to see your primary care provider. It could be so many things that are totally unrelated to your cancer. Most likely, it will all turn out to be tamoxifen-related, but you'll feel so much better after your pcp rules out a whole slew of ailments.

  • janincanada
    janincanada Member Posts: 10
    edited December 2015

    Thanks. I am CELIAC. ....that was a 50th birthday present. I am dairy intolerant and will be seeing a naturopath to figure out what else I need to avoid. My husband basically says food. A lot of the symptoms are similar to early stage ovarian cancer. I have had a partial hysterectomy almost 30 years ago. My last CT scan was a least three years ago as I am 8 years out and in Canada I was cut loose from my Oncologist at 5 years. Food for thought...no pun intended. No tamoxifen as I am her2nu+.

  • Gohan1983
    Gohan1983 Member Posts: 34
    edited December 2015

    I'm afraid cos my granny has had morning productive cough since a few months. Her last chest X-ray in August didn't show any mets...

  • Papillon1
    Papillon1 Member Posts: 85
    edited January 2016

    wishing you all a happy new year.

    After three years since diagnosis of multiple Mets my mum has just been put on 24/7 oxygen at home. That's not good is it... They are asking for her bed to be moved downstairs.

    She just started tdm1 in the hope of shrinking the lung cancer and giving her some relief - draining won't help.

    I can't help but feeL this is a very sad year ahead.

    Is anyone on tdm1 for lung mets?

    Anyone on oxygen long term?

    Best wishes to you all.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2016

    Hi Papillion, being on oxygen 24/7 is a good thing for your mum as her lungs are not functioning fully due to the cancer and the added oxygen will make her feel better. It will also help her other organs function better.

    I personally haven't used TDM1 but have heard it has done good things for a great many people.

    Cherish each and every day you have with your mom.......hopefully they will be many.

    Live n hugs. Chrissy

  • many
    many Member Posts: 57
    edited January 2016

    can I do pet ct scan & Brain Mri with contrast on the same day ? I just want to have your feedback

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2016

    Hi Many, there is no specific reason why these scans can't be done on the same day but it is possible that your facility cannot book them for the same day due to demand and time that it takes to do these scans.

    Love n hugs. Chrissy

  • many
    many Member Posts: 57
    edited January 2016

    I WAS WONDERING THAT FDG GLUCOSE GIVEN DURING PETCT SCAN DONE FIRST WOULD HAVE IMPACT ON BRAIN MRI TO BE DONE 3 HOURS AFTER PETCT?

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2016

    Many, from what I've read, the fdg shows activity in the brain on MRI but it shouldn't have an effect on looking for lessions or tumors.

  • Papillon1
    Papillon1 Member Posts: 85
    edited January 2016

    the oxygen seems to be little help. She is sleeping a lot, is harder to wake.

    I am living in another country, a flight away, and am so scared. Maybe she will have a nurse visit on Monday. Maybe this is a reaction to tdm1 or maybe not. She eats little. She can't walk even to the bathroom alone because of her breathing but also now leg weakness. This weakness is new today and she had the chemo 3 days ago.


    Turns out she is also taking LORAZEPAM - is anyone familiar with this drug? Seems the side effects could be contributing to her tiredness and weakness. She isn't anxious at all and still positive without herself, so we are grateful for this. Just wish I could help.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited January 2016

    What were your brain mets symptoms? And did they progress in severity or did they stay the same/get better at times?

    I've been have tingling, throbbing and twitching in my left arm for two months. It's my surgery arm so I initially wrote it off to surgery and radiation side effects. But I finally insisted on a brain MRI, even though I haven't had an episode in several weeks. I'm scared


  • rossileo18
    rossileo18 Member Posts: 55
    edited January 2016

    I am only a possible stage 4 -- TNBC stage 3 recurrence in chest wall, suspicious areas in bone scan but not confirmed -- and am being treated with Xeloda like a stage 4. I've posted in Xeloda topic since there's no where else for me to go it seems. Hope this is not serious breach of etiquette. Please advise

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2016

    Hi Rossileo and welcome, there is definitely no breach of etiquette. It's hard for you to know exactly where you fit and I can completely understand why.

    Are the docs waiting for a while to rescan you and see what is going on with those spots in your bones? I'm thinking that your present scan shows something but nothing large enough for definitive dx. Regardless, I really do hope the Xgeva does good things for you and what ever those spots are disappear.

    Love n hugs. Chrissy

  • rossileo18
    rossileo18 Member Posts: 55
    edited January 2016

    Chrissy.

    Thanks for the welcome. It's hard to know which forum to go to -- I'm definitely in better shape than many people in the Stage 4. But I don't feel like I belong in the Stage 3 -- there are still people who are hoping to finish treatment and go on to a normal life (especially early TNBC), and I'm not one of them. Hugs back! I like your motto. I have to work on that.

  • BLS
    BLS Member Posts: 5
    edited April 2018

    Hi there. I'm having extreme left jaw pain and I'm scheduled for CT scan of jaw next week.I also have a lump on my tounge (area of tongue deep in the throat) and I have a surgical tongue biopsy scheduled for next week too. All the research points to is Mets. I can't find much on here for jaw or tongue mets. I feel so alone and lost. Does anyone know anything about this?

    Thanks,

    BLS

  • marijen
    marijen Member Posts: 2,181
    edited January 2016

    BLS are you seeing a dentist for the lump and pain

  • ilaam
    ilaam Member Posts: 38
    edited January 2016

    Hello,

    Thank you chrissyb for the this thread.

    I've been diagnosed with Paget's disease of the breast in the right side (rare form of breast cancer often associated with DCIS or IDC) last month. I don't know yet my stage or grade. The surgery will be performed soon. I have clean mammogram and ultrasound. The next exam will be an MRI I suppose. Lately, I've been feeling back aches in the ribs of the right side. Not sure if the pain is in the bones or in the muscles. It lasts all the day and sometimes I have it when I wake up. It's like I want to vomit when I have these aches. Since my diagnosis, every little pain makes me think of metastasis.

    My question is: is it possible to have metastasis from breast cancer with clean mammogram and ultrasound of the affected breast before surgery?

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2016

    Hi ilaam, anything is possible with this disease but I would be thiking more along the lines of stress and or anxiety being the cause of your pain right now.

    It would not be out of order to ask your doc for something to help get you through this anxious time.

    Hoping your surgery goes well.

    Love n hugs. Chrissy

  • ilaam
    ilaam Member Posts: 38
    edited January 2016

    Thank you chrissyb . I hope so !

    Sending hugs to you too.

  • many
    many Member Posts: 57
    edited January 2016

    My wife has PET-CT scheduled on Monday morning@8am,Today ( Saturday)she had feet massage at2 pm .still 36 hours left for scan but can this feet massage cause wrong readings for PETCT SCAN ?plz comment

  • bevin
    bevin Member Posts: 519
    edited January 2016

    Dear Many

    I was told no carbs , completely no sugar and no exercise. I did not get told to not have a massage. If you are worried though you could call the clinic she is having the scan at and ask. They will be certain to provide full guidance.

  • pajim
    pajim Member Posts: 930
    edited January 2016

    Many, they tell me no hard exercise for 24 hours before. I believe you are safe for 2 reasons. First, it's 36 hours. Second, the effect is local. They won't be scanning her feet. . .

    Massage stimulates the muscles of the area and causes cell turnover. That's what PET scans measure. Normally PETs are head to thigh.

    I hope she enjoy(s? ed?) her foot massage.

  • Lolis
    Lolis Member Posts: 294
    edited January 2016

    Hi All,

    Happy new year!!

    I have a question for those of you with bone mets (it might be silly). How did the pain differentiate from arthritis?

    I don't think I have arthritis but I keep having pain in my left thigh. It is usually in the same place but for the last days it has change location. I have been taking vit D, calcium and magnesium for weeks now and the pain is still there. Also, I couldn't feel after I took Tylenol but that was before, now (last few days) I can still feel the pain after taking Tylenol. I had X-rays last year but it was normal ( no mention of arthritis). No pain that last for longer than a couple of days. I am wonder if this is arthritis or something else.

    Thanks.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2016

    Hi Lolis.....is your pain mid thigh? I was having pain mid thigh that was concerning so I checked with my doc. It turned out to be inflammation in my lower back that was referring pain to my thigh. After a few days of treatment the pain disappeared.

    As you know, anything is possible with this disease so if it is really worrying please go and ask your doc.......it may be something simple.

    Goodluck!

    Love n hugs. Chrissy

  • Lolis
    Lolis Member Posts: 294
    edited January 2016

    Thank you Chrissy.

    The pain is lower than the mid thigh and I feel it at night. The leg sort of feels heavier than the right one. Would inflammation show on X-ray or should I ask for a different imaging?

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2016

    Lolis xray would rule out mets so I would check that one first as it is the simplest and easiest. Should you need a different one then a CT/PET would probably be the way to go but I would discuss all this with your doc.

    Hoping for you that it's something simple.

    Love n hugs. Chrissy

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