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  • siddhivinayak
    siddhivinayak Member Posts: 78
    edited March 2021

    Good Morning all! I appreciate all ladies fighting here, i pray for well being of everyone here.

    Quickly moving on to my History, I was diagnosed TNBC stage 3 ,5 years back. I am currently not on any medicine. But from past 20-25 days i have startes coughing. Cough is usually dry or with very little mucus. I have pain all over my body and also i have lost 1.2KGs of weight in past 28 days (exactly). I feel like i have no energy . Cough is not continuos, it is ocassional.Cough is from past 25 days. Because of pandemic hospitals are closed, Is it Normal to lose that much weight?? . I am getting terrified after all.Kindly help me, What should i do?

  • moth
    moth Member Posts: 4,800
    edited March 2021

    hello siddhivinayak, I think you should make an appointment to see your doctor and get an xray or other chest imaging. Surely some hospitals or clinics are open somewhere? You should probably get a covid test too as dry cough can be a covid symptom . I would not wait on this.

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited March 2021

    sidd, I agree with moth. You REALLY need to see a doctor or at least a nurse. That is way too long to have a cough. Your weight loss is also concerning. Do you have a clinic that you could visit? Let us know when you get in to see someone.

    (((hugs)))

    Carol

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited March 2021

    Sidd, chiming in to agree with the others. Please see a doctor as soon as possible. Your symptoms do sound like they might be related to COVID or some other virus, particularly with the body aches. The weight loss is concerning but perhaps not a huge amount over a month depending on if you are eating normally. Hard to know from your post.

    If it helps to know my symptoms, I was originally diagnosed as stage IV with a pleural effusion in my right lung. I did have a dry, non productive cough but it was almost continuous, worsening over time. The cough was worse when I lay down (likely due to the fluid in my lung shifting) - I got to the point that I had to sleep propped up. I also became increasingly short of breath over about a month to the point that I would be gasping if I walked to the end of the driveway. My weight loss was dramatic, about 4 kg in a month, despite eating, as my body was working very hard to breathe.

    It seems your cough is different so I am sincerely hoping that you will get clean x-rays and scans but please have it checked out.

    Hugs. Pat

  • siddhivinayak
    siddhivinayak Member Posts: 78
    edited March 2021

    Thnq, @Moth, @Sunshine and @saddieServant. I went on to my primary care clinic today, as it was a personal appointment on my request, Some blood work was done and all reports are normal except i have low platelets and i have neutropenia. So,they prescribed me some meds and called me back within one week.

    Yes Saddie i am eating slightly less, I am very lucky that i hve found this website, It had helped me in many ways. I never left empty handed from this site, God bless u all 🙏🙏. I am from India. Namaskar to all.


    Moth i read your blog, its really nicely maintained with stickers and all this.Keep it up

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited March 2021

    I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

    6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.

    12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad.

  • siddhivinayak
    siddhivinayak Member Posts: 78
    edited March 2021

    Hi.. I am facing fatigue issues, as i went back to my doctor. I have lost another kgs of weight, so in total i have lost 3 kg(i.e 6.6lbs) weight in 1 month and 15 days, Occasional cough is still there, but my main problem is fatigue, No SOB till now, Slight fever is there, i am not able to get appointment to my onco care, still hanging with my primary care docotor. I have never face this much of tiredness in my life,Thats my latest update . Hoping to get appointment to my onco soon, but the chamces are grim as situation is already deteriorating due to COVID-19.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited March 2021

    siddhivinaya, I am sending you a big hug and I hope you can schedule the appointment with the oncologist soon.

  • orangeflower
    orangeflower Member Posts: 146
    edited March 2021

    Hi guys. I'm not sure if this is the right place to post this. My doctor has ordered a CT scan because I've had an occasional deep cough for over a year. In December 2019, I got a very bad case of the flu, with a severe cough. The cough really lingered, even after my other flu symptoms subsided, until I was left with an occasional deep, dry cough. It's usually just one cough at a time. Many days I don't have it at all. I assumed it was a post-viral cough, and I can't remember if I brought it up to a doctor. I am feeling so silly now. I should have brought this up to my oncologist but I was so overwhelmed with everything that has happened to me over the past year, and it just made sense to me that it was caused by the flu.


    I brought it up to my GP a month ago because it just isn't going away, and she ordered an X-ray, which was normal. My oncologist only just now got the results of it and called me to set up a CT scan. The scan isn't scheduled yet. Over this past year, I dealt with nausea and fatigue as soon as they started me on ovarian suppression, and I started feeling much better on my current regiment of just toremifene (a drug like tamoxifen).


    I am so anxious and will not be able to relax until I know the results of this scan. Everything about my diagnosis was favorable, I just can't believe that this could be mets. Have you known anyone who had a cough like this for a very long time after a flu? Please let me know if this post belongs somewhere else on the board. Thanks.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited March 2021

    I have a cough for several months now but I didn't bring it up to my appointment with MO in February. I read somewhere that nighttime cough that wakes you up maybe mets. I am curious too and I hope someone will write to let us know. I have a feeling that the immune system goes down when we kill the estrogen and the cough may linger for a very long time - this is my theory and I am not a doctor :)

    Good luck with CT scan. When do you get the results?

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited March 2021

    Hi Orangeflower, this is a good place to post and hopefully others will chime in soon. There are many things that can lead to a cough but it’s good that your MO is being thorough. I was diagnosed with mets as a result of a cough but it was a dry cough that was constant and persistent. It also showed up after a bout of the flu interestingly and simply would not resolve but the frequency sent me to my GP within about four weeks. An X-ray showed some fluid in my right lung. He ordered a CT and by the time I had it there was a LOT of fluid in my lung and I was very short of breath.Biopsy confirmed a malignant pleural effusion.

    Lily, I think what you are referring to is not more coughing at night but rather increased coughing when you lie down. That was definitely the case for me. I had to prop myself up in bed in order to get any sleep as once I lay down the coughing was unrelenting. I suspect the shifting fluid in my lung caused irritation.

    I sincerely hope the CT comes back clear and that others with lung nodules will be able to reassure you. I know it’s difficult not to worry so sending a virtual hug.

  • moth
    moth Member Posts: 4,800
    edited March 2021

    fwiw, my cough which turned out to bea huge met was not bad enough to keep me up at night or wake me up. It was just annoying during the day - & even then, not bad enough that I couldn't function. I was in nursing school & doing a clinical rotation at a hospital with it - they would have freaked if I were constantly coughing, kwim? I wasn't - it was just that it was always a bit there.

    I would not rely on that criteria alone. And really, a lingering cough should be checked out because it could be other things - asthma, allergies, other respiratory problems. Don't ignore symptoms, my friends :)

  • CandM
    CandM Member Posts: 9
    edited March 2021

    Hi again.

    Quick question ladies!

    My mom has had nothing but progression- and Im wondering if it is common practice to biopsy all sites?

    Original BC was hormone + HER2 -

    Biospy from pelvic mass changed to HER2 +

    Now liver is raging and im only going to assume it might have mutated again given that her first 2 lines have failed in short order!!

    Looking for some hope stories and sending my prayers to you~

  • moth
    moth Member Posts: 4,800
    edited April 2021

    CandM, I think you should join the liver & bone mets threads as your mom is definitely StageIV now. Your mom might need a genomic/next generation sequencing test and if she's switched markers once already, I think you should at least consider a new biopsy. Also pls post what treatments have been tried so we can make better suggestions about options.


  • ALovingDaughter
    ALovingDaughter Member Posts: 19
    edited April 2021

    hi guys. I have a question. Is herniated or slipped disc/disk common in cancer patients? Or does back pain immediately mean spinal metastasis

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2021

    back pain does not automatically mean spine mets, but certainly you should bring it to your doctors attention

    Not sure how common disc problems are, the usual problem is fracture

  • ALovingDaughter
    ALovingDaughter Member Posts: 19
    edited April 2021

    dear Olma61,

    Are your mets in your spine? If yes what did you feel as your symptoms

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2021

    yes, I have spine mets but I am one who never had pain with them (yet). They were found on a PET scan in 2017.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2021

    I've mentioned this elsewhere but I had a herniated disk in '16 and spinal mets in '19, with sacral fracture. Herniated disk was WAY more painful, mostly because I had a disk blow out with a bit touching the spinal cord, resulting in significant burning nerve pain and neuropathy in my big toe that exists to this day. The disk herniation was immediate pain, the mets pain was like a thief in the night and while there were, looking back, signs months prior, it wasn't until I did a common athletic move that has caused problems in the past which set it off. From there it got worse and worse until I could no longer lift my leg and then it fractured.

    There are a lot of ladies who have disk degeneration or arthritis in addition to mets. My lumbar mets cause me no pain, but I have to ensure I continue to keep the spine flexible and strong because I don't want another prolapse. Not all back pain is mets, but if there is ongoing pain beyond two weeks then you should raise it with your doctor.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2021

    In the general population, herniated discs are common. Most people have no pain. But when there is, it's often very painful.

  • ALovingDaughter
    ALovingDaughter Member Posts: 19
    edited April 2021

    thank you for all your responses! Does disk herniation cause weakness in the leg too

  • Stina
    Stina Member Posts: 4
    edited April 2021

    Hello,

    I am not stage IV (hopefully) as I am waiting on the results of my CT to see if my cancer has metastasized to my lungs.

    Here is my question: Why are there no regular preventative screenings for Breast Cancer patients? Why does it take waiting until you have symptoms to see if it has spread? This means it is usually too late to treat effectively.

    Pap smears, mammograms, colonoscopy, all designed to detect early development of cancer. But now that you have had it, and are more at a risk of it spreading elsewhere in your body, there are no regular scans available.

    It just doesn't make sense. If I were in charge, there would be scans (CT, PET or MRI) available every 2-3 years for breast cancer patients. This would provide peace of mind in many and maybe allow early treatment for others.

    Just my two cents......


  • FGodmother
    FGodmother Member Posts: 52
    edited April 2021

    I have one large bone met on L1. I had no back pain, but had referred pain to my left hip. The lesion is pressing on the spinal cord, so it transfers to a sharp pain in my left hip when I pivot. I start radiation next week to see if we can shrink the cancerous cells so that it no longer impinges on the spinal cord

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2021

    ALovingDaughter - in my instance the disk didn't cause leg weakness (it did cause "foot drop" where I couldn't lift my left foot),but the mets did. I would suggest you definitely bring it up with the oncologist because anything causing weakness usually means something is pressing on the spinal cord or nerves somewhere and needs to be dealt with (even if it is just a herniated disk - that would be a neurosurgeon) as it can impact other more critical areas like bladder control.

    If there is any ANY loss of sensation or numbness in the "saddle" area (between the legs, genitals area) or incontinence,that is a medical emergency and is absolutely an ER trip (signs of cauda equina).

  • moth
    moth Member Posts: 4,800
    edited April 2021

    Stina, the reason there is no screening for Stage IV is that studies did not show it provided any survival benefit. Finding it once it's symptomatic or finding it 6 months early, the person still dies on the same date....might have just gone through 6 months extra 'treatment'. Look up "lead time bias" for explanations of this. Also, the screening itself exposes the pt to radiation, toxic contrasts etc so it's not without risk. PET esp is high amount of radiation.

    BUT.... I think we need a new large study on this. I believe the last one was from late 90s/early 00s. These have to be super large population wide studies and rigorous so they're expensive but I do think we need to run them again because a) we have had advancements in those 2 decades in imaging & b) there are some new studies on aggressive treatment of oligmetastases and oligoprogression which *might* be showing some OS benefit. I think it's too early to tell.

  • ALovingDaughter
    ALovingDaughter Member Posts: 19
    edited April 2021

    thank you, SondraF. i'm not actually the patient but my mom. My mom is struggling from back pain and she experiences the "foot drop" that you said.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited April 2021

    Stina - your question is one i keep asking. Screening/detection options. After the bi-lateral, there seemed to be none. 2 1/2 years after bilateral,new cancer in r-axilla (previous 2 cancers on left). It presented itself as lymphedema in r-arm, clots ruled out. Nodes had only been removed on left side in 2009 (lumpectomy) and again in 2016 with bi-lateral. There were no scans or other checks during those 2 1/2 years. 1 year after detection, it mestatisized, even though CTs suggested tumor was shrinking.

  • Anx789
    Anx789 Member Posts: 168
    edited May 2021

    Hi, my calcium has been elevated (10.3 - 20.4) since last year but my PTH in on a normal low (29), it’s very unlikely it’s parathyroid. I’m concerned it’s hypercalcemia of malignancy, that some kind of cancer is causing it. I’m having issue with my throat, I’m feeling weird sensation and dry throat but no pain, my ENT thinks it’s allergy but it’s been bothering me for a while. Now with this elevated calcium again it’s worrying me. I will appreciate any info about hypercalcemia before cancer diagnosis or met

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2021

    I agree with moth, that the idea that finding mets earlier does not matter needs to be revisited. An additional point is that time of detection may mean a quality of life difference. For example, hormonal therapy if liver mets are found earlier vs. the need for chemotherapy if found when the liver has reached a critical/dangerous state; or treating bone mets before a fracture occurs rather than after.

  • Teaturtler
    Teaturtler Member Posts: 1
    edited May 2021

    I guess I am looking for someone in a similar situation as myself. My journey started with the discovery of enlarged supraclavicular lymph nodes on a head CT for another issue. Biopsy showed metastatic adenocarcinoma, no obvious primary. PET/CT showed involved left internal mammary node, multiple mediastinal nodes, the supraclavicular nodes (5.7 cm or about 2inches), and some level 5 neck nodes. No evidence of disease in organs, brain, or bones. Recent mammo was clear. Breast MRI clear. Thyroid scan clear. Genomic testing on node tissue finally showed 81percent chance of breast cancer. Primary never identified . I was given diagnosis of Metastatic breast cancer, Tx, N3, M0, HR neg, Her neg, considered unstaged. So, I am triple negative, PDL-1 neg, and a genetic mutation of PALB2, which is almost as bad as the BRCAs. I started chemo with Carboplatin and Gemcitabine 2/17/21. Currently on cycle 5 of 6.

    So I have breast cancer that is not in my breasts. Lymph nodes only. Surgery not an option, no lesion in breasts to remove. I have metastatic disease, but not considered Stage IV. I am triple negative so treatment options are limited. No immunotherapy since the PDL-1 is negative. I do qualify for PARP therapy because of the PALB2 mutation.

    So when I try to find information about metastatic triple negative breast cancer treatment, prognosis, chance of recurrence, etc it always presumes surgery is involved, there is a primary site that can be measured, there is a stage to start with, there are organs involved. My round peg does not fit in these square holes. Even filling out the form to join this site I had to answer I don't know to a lot of questions since " none of the above " was not an option.

    Anybody else out there not fitting in these standard categories?


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