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  • B-A-P
    B-A-P Member Posts: 409
    edited October 2021

    Thanks Shetland !
    Your tips have been most helpful. I believe I have one more loading dose in two weeks so I will tell them one at a time, and slower. And I’ll warm them up myself while I wait (since im never in on time anyway). I’ll keep everyone updated to see if that works better. I have all the faith in the world that it will

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2021

    Shetland- I spent a day and a half memorizing what I had written ( broke it up into paragraphs). Then I had to tape it at the studio. It was on a teleprompter, which was more difficult to use than I thought. You have to find the right speed but more importantly, there are no pauses on the teleprompter. There were lines I skipped and often I was just saying what I had memorized rather than reading it. This allowed me to pause and to breathe I did several takes snd the editor pieced the best parts together. It was a learning experience for sure. Had it been live, I would have brought my speech to refer to if I needed. It was stressful snd I sm glad it’s over. I am much better when I talk about something without rehearsing.

  • GlobalGal
    GlobalGal Member Posts: 29
    edited October 2021

    Hello All,

    I am new to this topic as I have been NED since 2019 following a thyroidectomy for papillary thyroid cancer where 3 central neck lymph nodes were also removed and showed metastatic breast cancer. Despite multiple PET/CT scans, mammograms, MRIs, biopsies, and ultrasounds, nothing was ever found in my breasts (or anywhere else). I have been treated with Anastrozole since 2019. My HER 2 status was unclear because there was not enough surgical tissue to run FISH testing. I also don't know what kind of cancer...the original pathologist said "possibly lobular", but nothing was ever put in writing.

    My February 2021 PET/CT again was was clear, but the one on October 22, 2021 looks like a bomb went off inside. Here is what the most recent scan reported:

    HEAD and NECK: Physiologic metabolic uptake is present within the head and neck. No cervical chain lymphadenopathy. The thyroid gland is absent.

    CHEST: Physiologic metabolic uptake is present within the thorax. No intrathoracic lymphadenopathy. The lungs are clear.

    ABDOMEN and PELVIS: Stable appearance of hepatic cysts, which measure up to 2 cm in maximum diameter within the right hepatic lobe and 2.7 cm within the left hepatic lobe.

    Multiple additional small foci of increased uptake are present throughout the liver, without corresponding CT abnormality, new and suspicious for multifocal hepatic metastatic disease. Index lesion within the anterior right hepatic dome demonstrates an SUV [standardized uptake value] of 7.0, located adjacent the margin of the patient's right hepatic cyst.

    Splenomegaly, increased in size measuring up to 14.8 cm in maximum transaxial dimension, previously 13.0 cm [my note: platelets have dropped down to 112,000].

    Physiologic uptake is present throughout the remainder of the abdomen and pelvis.

    SKELETAL SYSTEM: There has been interval development of multifocal osseous metastatic disease with new hypermetabolic bone lesions as described:

    * A focus of hypermetabolic uptake in the left posterior acetabulum [socket of hip bone] demonstrates an SUV max of 6.4 and is without CT correlate.

    * Focus in the right inferior ischial tuberosity [lower pelvis or "sit bone"] demonstrates an SUV max of 3.9 with a corresponding 7mm lytic lesion [damaged bone].

    * A 1.4 cm lytic lesion within the right proximal humerus [where humerus in right upper arm meets socket] demonstrates an SUV of 3.7.

    * Lesions within the T2 and T3 vertebral bodies [thoracic spine] demonstrates an SUV maximum of 3.3.

    IMPRESSION: Recurrance, with interval development of multifocal osseous metastatic disease and findings suspicious for multifocal hepatic metastatic disease. Contrast-enhanced MRI of the abdomen hepatic mass protocol is suggested for further assessment.

    **********

    I know that no one here is an oncologist [I have a phone appoinment with mine next Thursday], but wanted to introduce myself, describe the current situation, and hopefully chat with folks who've been at this for much longer than I have.

    Since I don't even know what the cancer is (assuming breast cancer rather than papillary thyroid cancer or a new primary of something else), and also because it could have changed in characteristics from the original version, is it reasonable to ask for a biopsy? Liver (small foci might be hard to hit) or is bone easier (larger target)?

    Globalgal



  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited October 2021

    Yikes, GlobalGal. That is not what anyone wants to hear. Yes, you should get a biopsy if possible, so you know what type of cancer or subtype of breast cancer you are dealing with. Your oncologist will likely consult with the interventional radiologist to determine the best and safest site to biopsy. I would also find out if your oncologist can ask the pathologist to elaborate on the "possibly lobular" comment. Hang on, this time of more questions than answers is very difficult.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited October 2021

    LFF,

    That is so amazing you were able to raise so much money! You are so articulate and your speech is so moving. You never cease to inspire me!

    Hugs, Susan

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited October 2021

    LFF- Such a great video. I had no idea the ACS could be so helpful. You have great support!

    GlobalGal- wow you must feel gut-punched by this report. But there are things that can and should be done.

    1st- Breathe! Do something good for yourself. Process what you can and prepare for a bumpy ride. There are local treatments like radiation, SBRT, y-90 etc. plus systemic treatments like CDK 4/6 plus endocrine, targeted therapies and chemotherapy

    2nd - why wait until Thursday to talk to your MO? If it were me, I would get on the phone on Monday to deal with this "bomb" as you put it. start setting up your next steps.

    3rd- I agree with Shetland, please try to get a biopsy and be sure to get next gen sequencing(NGS) like TEMPUS or Foundation One to see if there are mutations, etc. which could drive treatment choices like targeted therapies. You will want to see if you have the ERS1 mutation since you progressed on anatrazole.

    4th- get some support, we are here for questions and support as people who have been through similar circumstances. But you will want people near you to help with practical things. Don't be afraid to ask.

    You are in my thoughts and prayers. Check back in! We care.

    Dee

  • bsandra
    bsandra Member Posts: 1,030
    edited October 2021

    Dear LFF, phiuuu... I cried watching your video. You are amazing. You really are.

    Dear BAP, after your photo with the mirror, I went and checked ours, and... started to clean it right away:)) I am pretty pedantic in my life but... So you see, you drive progress in Lithuania being even several thousand miles away!:)

    Dear GlobalGal, well...very sorry for these news. Did they compare the PET with the previous one (they should have), was it the same radiologist (I once wrote how one of our MRIs was completely misread or taken from another person)? What about your tumor markers, were they checked constantly? What about your blood biochemistry (you mentioned only PLT)? From the description we can see that changes are still pretty small, SUV only indicates activity. You might need a biopsy from the most "vocal" lesion. Bone biopsy is much more challenging than liver. Even if disease is confirmed (which still might be something else), If you want to hit it hard and right targets are found, you have so many possibilities and you might have an amazing response!

    Saulius

  • seeq
    seeq Member Posts: 1,169
    edited October 2021

    LFF - great video

    GlobalGal - I'm sorry for the shocking news. I don't have any answers for you, but I wanted you to know I care. I agree with Dee, why wait? Even a telephone call could help put your mind at ease by knowing there's a way forward. Hugs.

  • moth
    moth Member Posts: 3,293
    edited October 2021

    BAP, yup, that's ventrogluteal. Definitely ask for way slower. Try for 5 min (1 ml/min)

  • B-A-P
    B-A-P Member Posts: 409
    edited October 2021

    Salius ! Haha! Glad I could help 😜 I honestly don’t think I’ve cleaned my mirror all that well since the picture but rest assured the rest of the bathroom has been cleaned 😜

  • candy-678
    candy-678 Member Posts: 4,171
    edited October 2021

    Cross posting----

    I had my labs and MO visit today. We are going to lower the Lynparza dose from 600mg a day to 500mg to see if it helps with the nausea. Labs looked ok, but WBC down a little (from 2.7 to 1.9), as too was hemoglobin (10.2 down to 9.1). We will monitor next month and MO thought lowering the dose would help stabilize the numbers too. Scans scheduled for Nov 22. That will be 11 weeks from the start of Lynparza. MO seems anxious to see how scans look, she didn't want to wait any longer to schedule scans. She said stable would be ok, but she wants shrinkage. If the Lynparza doesn't help, she still wants me to consider Y90.

  • bsandra
    bsandra Member Posts: 1,030
    edited October 2021

    Dear Candy, what encouraging words from your MO: "she wants shrinkage"! Hope nausea goes down too. I think if you suffer, disease suffers too (oncology strives to change that - to make disease suffer without you suffering but so far it was one of the signs of response) - good sign.

    Dear Nicole, please write how you are doing?

    Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2021

    thanks for asking about me Saulius. I went to chemo this morning but we are now down to the lowest dose 50% of the Halaven/Eribulin. I no longer feel like, ..... me. I have been through 6 treatment lines in 2 years and have always felt like ...me. I do not anymore. I am always tired and have stomach issues...my fracture at C7 hurts, I have no engery or desires for anything. My bilirubin today was 1.1 which is up from 0.7 and 0.8 which for ME is usually indicitive of progression...I am not surprised as 2022 looms nearer....... My next treatment would be Trodlevy..which I really do not know much about and really no info from people on here about side effects... I am debating stopping treatments after this... I just really don't know how much more I want to take...don't misunderstand me I don't WANT to die...but...I also want quality of life...and now being Triple Negative..I think my fate is pretty much sealed...I am blessed though...I mean I have lived 2 years since diagnosis..I know some people that get cancer and die with in 6 months or a year.

    So thats pretty much where I am at. I scan end of Nov but I already know the outcome...just don't know HOW much progression....

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2021

    NicoleRod- hugs, nothing else to say. No one should ever feel like you do. You’ve been through so much. Know we love you and hope things turn around for you. Also know we support you .

  • moth
    moth Member Posts: 3,293
    edited October 2021

    Nicole, re Trodelvy, I'm sure you've seen this thread https://community.breastcancer.org/forum/72/topics...

    from that thread & the people I know on Twitter who've been on it, nausea, diarrhea, fatigue are the biggies. But lots of people get that under control and do well on it.

    I really hope you're wrong about the scans.....

  • husband11
    husband11 Member Posts: 1,287
    edited October 2021

    Nicole, my heart breaks for you. I pray that you will find an effective and sustainable treatment.

    Is there any immunotherapy option? No doubt you have explored this. I thought triple negative was more likely to have mutations that made it stand out to the immune system.

  • GlobalGal
    GlobalGal Member Posts: 29
    edited October 2021

    Dear BSandra, Alabama Dee, Shetland Pony, and SeeQ,

    Many, many thanks for chiming in on my recent MBC posting. I greatly appreciate the warm support and helpful suggestions. Unfortunately, my DH is already planning where to locate my hospice bed and my memorial service, so it is encouraging to hear more hopeful comments!

    As suggested, I wrote to my oncologist and asked many of the questions raised here. Hopefully, she'll have a plan of sorts ready when we talk on Thursday. In the meantime, I am busy educating myself on topics you are deeply familiar with, but are brand new to me, like SBRT, Y-90, targeted therapies, next gen sequencing, ESRI mutation, etc.

    I did pay out-of-pocket in 2019 for the Color Cancer Genomics Test, and no mutations were identified (30 genes analyzed):

    APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4, CDKN2A (p14ARF),
    CDKN2A (p16INK4a), CHEK2, EPCAM, GREM1, MITF, MLH1, MSH2, MSH6, MUTYH, NBN, PALB2, PMS2, POLD1, POLE, PTEN, RAD51C, RAD51D, SMAD4, STK11, TP53


    So far, except for dropping platelets, my blood chemistry has been ok as far as I can tell. My Vitamin D and B12 were very low, but I have been taking supplements.

    Tumor markers (CA15-3), on the other hand were stable, but now are rising:

    2019: 5/19 17.0, 8/19 11.4, 12/19 10.3

    2020: 4/20 11.0, 8/20 15.7, 12/20 14.4

    2021: 12/20 14.4, 1/21 15.2, 9/21 65.5, 10/20 157

    As for the PET scan radiologist, it appears he/she compared the 10/22/21 PET to the previous one earlier this year on 2/23/21 (which was NED). The reading radiologist(s) is/are not identified in any reports (this is an HMO, not an NCI cancer center).

    GlobalGal

  • moth
    moth Member Posts: 3,293
    edited October 2021

    GlobalGal, I just want to bring to your attention the difference between gene testing like you had done (which is used to find germline mutations in your DNA) and next generation sequencing/genomic testing which is done on the *tumor* to identify any somatic mutations. We have a thread on genomic testing for Stage IV here https://community.breastcancer.org/forum/8/topics/...


  • BevJen
    BevJen Member Posts: 2,341
    edited October 2021

    GlobalGal,

    I just looked back at your original post where you had info about your scan. Looking at the info labeled "impressions," which is generally the most important part of any such report to look at, it suggests a contrast-enhanced MRI to look more closely at your liver. I would push for that. In fact, you might want to ask for a biopsy and a genomic test such as Foundation One or Caris. Cancer can mutate, and mutations offer the opportunity to try different treatments.

    Also, I would think about a second opinion, if at all possible, at an NCI/NCCN Cancer Center, even if you have to travel. They will have a better breadth of knowledge about MBC and be better able to advise you (and possibly you MO as well).

    Finally, is there a reason that you are consulting with your MO via telephone? It's unclear to me is this is a real "Telehealth" visit or if it's just a phone call to discuss your scan. I would want to get on top of this and get some more definitive advice than it sounds like you've gotten so far.

    These are just my thoughts, and you can ignore them, but I've been at this game for a LONG time (first diagnosis in 2003, but monitored from 1990 on because LCIS was found in a biopsy at that time) and it's a steep learning curve.

    Good luck

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2021

    Thanks LFF (especially with all you are going through right now). and thanks Moth you always provide so much info and thanks husband you are so kind....

    So my MO literally just called me on the phone she was worried about me because this morning after my infusion I saw her nurse (whom I love) and I broke down crying to her.... Anyway we talked about the Trodlevy being next and she said she is concerned about the fatigue for me... :(. but she also said she wouldn't start with a high dose but rather a low one. She would like me to have a good quality of life and be able to have that with a treatment. We also discussed hospice if I decided to stop treatment and such.

    I will see how I do today on this infusion and then see if I can do 2 more before the scans.

  • seeq
    seeq Member Posts: 1,169
    edited October 2021

    GlobalGal - what moth said, and to add that new tumors could have different mutations. I'll guess that your dh is as stressed out as you are and trying to be "on top of things" that he can control as a way to cope.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited October 2021

    Nicole,

    I'm so sorry that you are feeling this way and that you continue to struggle with treatment. I do understand as it's such a constant balancing act between longevity and being able to function. It's so hard once you have faced so many treatments. Know that our thoughts and prayers are with you and we are here to support you.

    I'm going through some ups and downs of my own at the moment with Vinorelbine - intestinal pain and discomfort that makes it hard for me to function at times. I've made three calls to the Cancer Agency and so far they have told me to 1) take pain meds, 2) take an antacid and 3) take anti nausea drugs, none of which have any impact whatsoever. I'm better if I don't eat - not precisely sustainable. If I eat normally, I end up with terrible abominable pain making it hard to sleep or to find any comfortable position. MO seems to think it's the chemo but I'm still having trouble almost two weeks out from the last infusion???? Not sure if I can persevere with this one if we can't get a handle on the issue... Sigh. I'm only one cycle in.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited October 2021

    BevJen,

    Don't get me started on the telehealth issue. I am so done with telephone calls from physicians! As I've noted previously, I have not seen a Cancer Agency physician in person for coming up to two years. That despite liver progression in January and now further liver progression in September. As I mentioned, I'm struggling with the side effects of treatment (which I have reported multiple times) and I'm still having a bloody phone call tomorrow with one of the GPs on staff at the agency. I get that they are dealing with vulnerable populations and need to be cautious with COVID but, for the most part, their patients are double vaccinated (now many are triple vaccinated - I had poke number three on Saturday) and staff are mandated to be vaccinated. If they have concerns, they can figure out who is not vaxxed based upon their personal health number - information they have.

    I don't, for a minute, think that I needed to see my oncologist in person every time I have spoken to him over the last two years but now this has gotten ridiculous. Time to start seeing patients again boys and girls! (And Moth, I know you have indicated that you are seeing your MO. Really happy for you but wonder how common that is on the Lower Mainland. Is this just a thing here on the island?) Under the circumstances, with vague gut pain (oh... and a newly inserted port that they might want to check) I think a real examination is in order. Too much to ask? The nurse I spoke to last week about the abdominal pain told me to go to emergency if it gets bad. Right... great place for me to be with a lowered immune system and a fabulous use of our precious healthcare resources not to mention that fact that the ERs are all full due to an influx of Covid patients from other health authorities...

    Okay... rant over. Winking

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2021

    Sadie..thanks for your words of kindness...I am so sorry you are struggling as well...I hope you get control of that pain and discomfort.

    I am shocked that you haven't seen your MO in 2 years!!!! I see mine every single month in person....


    ********PS....has anyone gotten a pediatric port??? I am thinking I need a port now....and I have heard that most tiny very thin people have the most issues with ports but otherwise they are really easy...so I asked my MO about getting a pediatric one and she just messaged me after speaking to the doctors that do it, that they can in fact give me a ped's one just wondering if anyone had this?*****

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,274
    edited October 2021

    Nicole,

    Bard makes a petite power port for smaller adults. I have had one for ten years without any problem. Please ask about it and take good care.

  • moth
    moth Member Posts: 3,293
    edited October 2021

    Sadiesservant, I know some people are doing telehealth in the Lower Mainland Cancer agencies, but also I'm not the only one not doing them - there are always people in the waiting room with me. I have had some telehealth appointments here & there with various providers, an RO, my MO's locum once, pulmonology etc but I'd say easily over 95% of appointments have been in person, right from Feb 2020, every 3 weeks... I hope you sort out the stomach issues. That sounds so miserable.

    Nicole, sending you big hugs. I hope you recover well from this infusion.

  • B-A-P
    B-A-P Member Posts: 409
    edited October 2021

    Nicole,

    I think I have a power port but mine is the slim one and doesn’t stick out as much as my regular size one did. I have not much padding in my chest or collarbone so it is visible but I do notice a difference.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited October 2021

    Nicole, you have had this really hard but please try and hang in there for now, although getting plans in place for palliative and hospice is just sensible I think… a plan doesn’t mean it has to happen immediately! I’m doing the same here.

    I had a port inserted 14 years ago for 8 months…this was when they were only using them for children with cystic fibrosis…I was apparently one of the first adult cancer patients to have one. Total game changer in term of the stress of being ‘rigged up’ every time you go in. Push for it if you have the energy.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited October 2021

    Nicole

    image

  • bsandra
    bsandra Member Posts: 1,030
    edited October 2021

    Dear Nicole, you know how my heart hurts for you but no no no, please, don't talk about dying - you are not there yet, not even close. As you are TN now, there are options. Don't forget that atezolizumab and pembrolizumab is there too, and people get super-responses despite of their PD-1/PD-L1 being low or negative, so Trodelvy is not the only option. BTW, we talked before about getting some help with antidepressants/sleeping pills - you need to rest and see some light in your life, and these things help. Don't let disease overwhelm you, as you are so much stronger than it! Saulius

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