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Topic: IBC lounge: roll call, support and just a good place to hang out

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Mar 31, 2016 06:23PM

PurpleMinion wrote:

Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:

I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.

IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.

I am taking a "board break" mid June 2016, I will be back but mentally exhausted right now. Peace be with all of you. Diagnosed at 46 triple negative IBC. Mets to skin, lungs, bones. Dx 6/29/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 7/22/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 10/22/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/4/2016 Dx 5/6/2016, Stage IV, metastasized to bone Chemotherapy 5/9/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx Stage IV, metastasized to lungs
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Jan 3, 2020 01:46AM BSandra wrote:

Dear Lori, yesterday I stumbled upon several articles about Metformin overcoming Trastuzumab based drug resistance (T-DM1 including) in Her2+ setting, mainly targeting CSC. Probably you already know about it. Don't want to post any particular links because there's much information ~ from 2008 to this day. Maybe that helps us all. In fact, we started with a very small dose of Metformin (250 mg/d) one month on, one month off, on 1st of December... so far so good, we do not notice any SE... I know even healthy people take it up to 1000 mg/d for various reasons. We'll see maybe in February (now month off) we'll start taking 500 mg/d.Just to note: we do not do/try non-science-based-medicine, and only try things that have sci-evidence, sometimes not complete, but one have to risk a bit... Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 7, 2020 12:49PM LoriCA wrote:

Saulius I know you didn't really mean that QoL is not important because I know you don't want your wife to suffer more than she has to. We go after early disease more aggressively and any decrease in Qol is temporary. With MBC we can't be so aggressive because we hope to be in it for the long haul, and because SEs are cumulative. It's one thing to be on a drug for a defined period of time when toxicity is high, but when you hope to be on a drug for possibly years before progression, that higher level of toxicity can become a serious and often life-threatening issue. That's why we typically start with the least toxic treatment and work our way up to more toxic treatments. But everyone has their own idea of what is an acceptable QoL, and it depends on many factors. For example I think (most) people with young children are willing to accept a lesser QoL in order to have more time with their children. For someone who doesn't have children, the priorities are often different.

I know there's a lot of interest in Metformin and several trials underway with the drug, but I'm not convinced it's worth experimenting with yet. I know that many people are asking their doctor to prescribe it off label. I think it's another one of those drugs where maybe something is there, but they haven't figured it out yet. All of the trial results that I've read have shown there's no statistical difference in non-diabetic people, and I saw a few with decreased PFS and OS (insignificant) with the use of Metformin, as well as some lab studies that yielded results in direct opposition to the hypothesis to the surprise of the researchers. Most of the trials had a small sample size so the results may not be meaningful, but I haven't yet seen anything to convince me that it's worth experimenting with. Any "promising" lab results haven't yet transitioned to real life (except for people with Type II diabetes). But it does bear watching.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Jan 8, 2020 03:42AM BSandra wrote:

Dear Lori, yes QoL is a complex personal issue. Even same drugs are tolerated very differently, so how to approach the disease is personal. As for Metformin - it is a dilemma, as for all drugs or supplements, as our lives are at stake... Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 9, 2020 10:34PM Flo80 wrote:

hi all my surgery was 26 November and I am still waiting for my radiation to start. They just did the ct stimulation scan on 6 January and now waiting for the date. Things in Canada ate so slow and nit much I can d

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 10, 2020 05:38PM - edited Jan 10, 2020 05:55PM by Frisky

Hi Lorica,

Check this out...I'm not sure if you know about the role of methionine in cancer cells.

Most metastatic tumors, such as those originating in the prostate, lung, and gastrointestinal tract, respond poorly to conventional chemotherapy. Novel treatment strategies for advanced cancer are therefore desperately needed. Dietary restriction of the essential amino acid methionine offers promise as such a strategy, either alone or in combination with chemotherapy or other treatments. Numerous in vitro and animal studies demonstrate the effectiveness of dietary methionine restriction in inhibiting growth and eventually causing death of cancer cells. In contrast, normal host tissues are relatively resistant to methionine restriction. These preclinical observations led to a phase I clinical trial of dietary methionine restriction for adults with advanced cancer. Preliminary findings from this trial indicate that dietary methionine restriction is safe and feasible for the treatment of patients with advanced cancer. In addition, the trial has yielded some preliminary evidence of antitumor activity. One patient with hormone-independent prostate cancer experienced a 25% reduction in serum prostate-specific antigen (PSA) after 12 weeks on the diet, and a second patient with renal cell cancer experienced an objective radiographic response. The possibility that methionine restriction may act synergistically with other cancer treatments such as chemotherapy is being explored. Findings to date support further investigation of dietary methionine restriction as a novel treatment strategy for advanced cancer.

Methionine deprivation suppresses triple-negative breast cancer metastasis in vitro and in vivo.

Hopefully you'll find some useful information. I'm starting a low-methionine diet, basically a vegan diet that should weaken the cancer cells so chemo can kill or keep them under control.

https://img1.wsimg.com/blobby/go/719531d1-4d4f-427d-9915-daa0f2e0517b/downloads/Methionine%20Deprivation%3ATNBC%202016.pdf?ver=1578355355920

ABSTRACT

Nutrient deprivation strategies have been proposed as an adjuvant therapy for cancer cells due to their increased metabolic demand. We examined the specific inhibitory effects of amino acid deprivation on the metastatic phenotypes of the human triple-negative breast cancer (TNBC) cell lines MDA-MB-231 and Hs 578T, as well as the orthotopic 4T1 mouse TNBC tumor model. Among the 10 essential amino acids tested, methionine deprivation elicited the strongest inhibitory effects on the migration and invasion of these cancer cells. Methionine deprivation reduced the phosphorylation of focal adhesion kinase, as well as the activity and mRNA expression of matrix metalloproteinases MMP-2 and MMP-9, two major markers of metastasis, while increasing the mRNA expression of tissue inhibitor of metalloproteinase 1 in MDA-MB-231 cells. Furthermore, methionine restriction downregulated the metastasis-related factor urokinase plasminogen activatior and upregulated plasminogen activator inhibitor 1 mRNA expression. Animals on the methionine- deprived diet showed lower lung metastasis rates compared to mice on the control diet. Taken together, these results suggest that methionine restriction could provide a potential nutritional strategy for more effective cancer therapy.

Good luck...the frisky one...

“Things are not always what they seem; the first appearance deceives many; the intelligence of a few perceives what has been carefully hidden.” Phaedrus Dx 3/9/2015, ILC, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 3/15/2015 Femara (letrozole) Hormonal Therapy 3/10/2017 Faslodex (fulvestrant) Targeted Therapy 3/10/2017 Ibrance (palbociclib) Surgery 4/4/2017 Radiation Therapy 4/9/2017 External: Bone Hormonal Therapy 1/5/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 2/9/2018 Afinitor (everolimus) Chemotherapy 6/1/2018 Xeloda (capecitabine) Chemotherapy 7/19/2019 Doxil (doxorubicin) Chemotherapy 12/14/2019 Navelbine (vinorelbine)
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Jan 14, 2020 02:14PM Flo80 wrote:

I was stage 3 b before surgery and Er/Pr positive and her2-. After surgery had 8 lymph nodes positive and still 3 cm tumour left and am now her2+. I did not receive herceptin before surgery but my oncologist wants me to start herceptin and Parjeta. I want to take kadcyla looking at its excellent results. Anyone with the same situation.

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 14, 2020 06:28PM LoriCA wrote:

I assume you are looking at the results of the KATHERINE study which showed a 50% reduction in the risk of recurrence when there is residual disease after treatment? The results make it definitely worth discussing with your oncologist, but it's not a decision to be made lightly. T-DM1/Kadcyla is a chemo, Herceptin is not, so you'd have all of the side effects of chemo (except hair loss) for a year, and the toxicities of T-DM1 are no joke. Only you and your oncologist can decide if the side effects are worth the risk reduction. Of course you can always try one or the other and switch if you need to. Your oncologist will probably want to wait until after you've completed radiation to see if that resolves the remaining tumor before agreeing to put you on Kadcyla since the KATHERINE study was for residual disease after completing chemo, surgery, and rads.

There is a thread in the HER2+ section with women who are on Kadcyla for early stage, they may have some good insight for you- https://community.breastcancer.org/forum/80/topics/874047?page=1

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Jan 15, 2020 08:28AM BSandra wrote:

Dear Flo, sorry to ask (maybe you already wrote), but you did not get neo-adjuvant chemotherapy, is that correct? Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 15, 2020 12:56PM Flo80 wrote:

Dear Lori,

Thank you so much and how are you feeling now? Lori I had mastectomy on 26 November and my path report showed 8 lymph nodes positive and 3.2 cm of residual tumour. I was her2-before so did not take herceptin. I spoke to my oncologist yesterday and she said that the people who participated in the Kathryin trial all had taken herceptin before. So she does not have any study to see whether Kadcyla can be given to me when I did not take Herceptin. She is ready to prescribe me Parjeta with Herceptin. She said if I want she will get me a second opinion from some doctors in Toronto. The scan I had before surgery had shown normal lymph nodes and marked improvement. I had clear margins though. I have started taking zoladex and exemestane as well.

So don’t know if she will give me Kadcyla. I heard from a Facebook group that people who had taken herceptin and had residual tumour for stage three they are giving them Kadcyla. I will appreciate your thoughts on this. My brother is an oncologist in Dana Farber and he discussed my case with a breast cancer oncologist there and she says Herceptin and Parjeta for a year and then Nwrlynx.


Thank you

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 15, 2020 12:57PM Flo80 wrote:

Ho Bsandra yes I did and as I was her2-before did not get herceptin. That’s why since the Kathryn trial showed 50 percent reduction so was asking my oncologist for Kadcyla.

Thank you so much

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 15, 2020 09:47PM blue22 wrote:

Hi Flo,

I also changed from her2- to her2+. I was told my case is pretty unique, and my Oncologist consulted with several other Drs. before deciding how to proceed. She is giving me HP as well as zoladex. She also wants to give me Xeloda, but we have delayed that due to me still having fatigue and nausea, as well as diarrhea caused by Perjetta.

I visited an IBC specialist before starting radiation. She also recommended HP, but not the Xeloda. I have mixed feelings about taking it. The argument for the Xeloda is that normally patients receive HP with chemo, but in my case I didn't, since during I was initially her2-.

The IBC specialist recommended another her2 targeted drug after one year of HP, I'm pretty sure it was Kadcyla.

I understand your frustration. I am 100% sure of the HP, considering both my Dr. and her colleagues agreed on it, as well as the specialist. The Xeloda is tough, if I don't take it, and the IBC comes back, I will regret my decision. On the other hand, I really don't want more chemo....

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Jan 16, 2020 09:27AM BSandra wrote:

Dear Flo, I don't think the decision is easy, maybe even not you but doctors, i.e. the multidisciplinary team has to decide what next steps should be. I'd say, if tumor is 3 cm and her2+ you have to start HP (at least that, maybe add Taxane, if you did not have one, to the combo) asap. MABs also work in synergy with radiation. As you are an "early-stager", you should be treated with curative intent and everything must be done to cure you, please demand nothing less than that... Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 16, 2020 09:50AM BSandra wrote:

Dear Lori, when will you have your scans? Praying for you, praying for good news... Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 16, 2020 01:00PM - edited Jan 16, 2020 01:02PM by Flo80

Dear Blue22,

I agree and I wanted Kadcyla so badly as it has shown to reduce the reoccurrence by 50 percent. My oncologist can't decide on giving me Kadcyla because she thinks the katryin trial was based on people who did take Herceptin before surgery and I have not. My brother consulted one colleague at Dana Farber and she thinks I should take Herceptin and Parjeta for one year and then Nerlynx.

I agree with your dilemma of not taking more chemo but if you can take something more to reduce reoccurrence please do. And also if you can get Kadcyla that would be wonderful. My oncologist is going to get me a second opinion about Kadcyla and she said can take one month. I am in dilemma like I don't want to delay not taking HP till the decision comes. I also have to use our private employer insurance for perjeta as for stage three it's not covered in Canada. I wish you lots of happiness and good health . I think we should take this disease as aggressively as we can. My radiation oncologist also is giving me only 16 rads with 42 Grays and I have to fight for more.


Thank you so much

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 16, 2020 01:03PM Flo80 wrote:

Dear Lori,

Praying for good scans for you. You are always in my thoughts and one of the first people who helped me calm down in this breast cancer journey.

Regards

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 16, 2020 01:07PM Flo80 wrote:

Dear Saulius,

Thank you so much for replying me back. I had a tumour initially about 5.2 and after surgery it was 3.2. The chemo had worked as my skin thickness was gone and also it had showed tumour very small with no lymph node involvement. Surgery had showed 8 positive nodes.

I had to fight with my oncologist and at the most she is willing to give me Herceptin and perjeta. For the Kadcyla she said she will ask . Till that time she thinks I should not start HP as it might interfere. I don’t want to wait too long. They also started my radiation after 7 weeks post surgery. I have to fight for more as they are giving me only 16 with bolus.

Thank you

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 17, 2020 02:32AM BSandra wrote:

Dear Flora, HP with radiation work in synergy, so it'd be cool if you could get both. I know it is a frightening reality but you maybe might go for a second opinion regarding all possible modern treatments... Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 17, 2020 08:17PM LoriCA wrote:

Thanks for the prayers and good thoughts everyone. Had consult (and infusion) yesterday. All signs seem to indicate that I am responding to this treatment, the first one in over 15 months, so we're sticking with it for now even though it hasn't been easy on me. He did say that he was open to letting me skip/postpone treatment if I felt that I needed more time to recover, which I took as a good sign that we weren't in urgent "kill mode" right now to try to get it to slow down, but it's also because he's concerned about my Quality of Life. Told him that as long as we can keep the nausea under control & I'm able to eat (and the fevers don't get any worse) I want to stay on schedule. If we finally found something that is working I don't want to back off even a bit.

No time frame on a PET scan right now Saulius. They typically wait 3-4 months after the start of a new treatment before scanning to give it time to work, so that would be somewhere around February-March. Since I usually have obvious signs that the cancer is spreading and it moves fast, we've never actually had to do a "monitoring" scan, it's always been to confirm progression we already suspect. If I have don't have any signs that it's spreading again when I'm due for a scan, I might just wait. Worst thing would be to get a monitoring scan in April, then in May have signs it's spreading again and have to fight for back-to-back PET scans. Insurance companies usually will only approve one PET/CT every 3 months and I've never been declined yet but I hate to keep pushing my luck. PFS on Kadcyla is only 7 months anyway, and with my resistance problems I figure I'll be lucky to get that long on it.

Flora the concern that your MO may have with doing Herceptin during radiation is that your cancer was on your left side, which means that your heart comes into play. Since Herceptin is cardiotoxic there is some concern that it's an added risk. Even though mine was my right side, the radiation field crossed my sternum to include part of my left side, so my MO was very hesitant to let me continue H&P during rads. It was only because I convinced him that my echocardiogram showed that my heart was more than strong enough to withstand the added stress that he allowed me to continue it during rads. Have you had your baseline echo or muga done yet? You'll need to have your heart (LVEF) monitored regularly as long as you are on Herceptin (or Kadcyla). The standard is every 3 months, but my cardiologist told me I only needed every 6 months because my heart was so strong.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Jan 19, 2020 11:11AM Flo80 wrote:

Hi Sallius,

Thank you so much and let’s hope it helps stop reoccurrence later. Thank you so much. I decided to stick with my oncologist suggestions

Regards

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 19, 2020 11:14AM Flo80 wrote:

Dear Lori,

I pray that the new treatments continue to work and you are always in my thoughts and prayers. Lori I decided to stick with my oncologist suggestion for HP and nit to go for a second opinion. My brother who is an oncologist had asked one breast cancer oncologist at Dana Farber and she also said that they give Kadcyla to some one who is her2 3+.

Thank you so much

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 20, 2020 02:01AM BSandra wrote:

Dear Lori, PFS is an average figure and if you respond, it can last forever. You also don't know (nobody knows) what immune and other mechanisms T-DM1 might unlock. I wish you all the best in this journey and we'll go along, and luckily we'll still write here after many man years. Lot's of hugs and keep us posted,

Saulius

Since Dec 2019: NED. Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Jan 20, 2020 08:00AM Flo80 wrote:

Hi Sallius,

Amen to that and wishing good health and happiness to everyone.

Regards

Flor

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 24, 2020 01:05AM Missmom79 wrote:

Lori I am praying for you for NED with your new treatments that seem to be working for you. Hope that they can at least get your nausea under control and I know it can be quite debilitating. Prayers

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Jan 24, 2020 03:34PM LoriCA wrote:

Thank you MissMom. I don't even think about getting NEAD as I've been told it would take a miracle. I'm just thankful that it seems like we finally found a treatment that appears to be working and right now all of my symptoms are under control.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Jan 24, 2020 07:30PM sbelizabeth wrote:

Lori, it sure put a smile on my face to read your post. Let's keep all the symptoms under control forever.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 24, 2020 08:19PM LoriCA wrote:

Thanks SB, it is nice to be symptom free for a while! Now if only I could figure out how to be side-effect free hahaha! :)

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Jan 24, 2020 10:57PM Flo80 wrote:

Dear Lori wishing you happiness and good health always.

Regards,

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 24, 2020 11:02PM Flo80 wrote:

Dear Lori,

I am doing radiation and had my mastectomy on 26 November. Both my hands are numb. When I press my fingers they hurt . The index finger in my right hand clicks and hurts a lot. Also my legs hurt when I get up after sitting for a while. Can these Bone Mets. My feet hurt when I walk but get better over time. I have had a ct scan of my chest, pelvis, neck, head and abdomen and are clear. My oncologist was not concerned about my bones but I pressed for a bone scan which is on January 31 . She is sure these are because of treatment. I don’t know how to manage my pain.

Regards

Flira

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Jan 25, 2020 04:58AM Traveltext wrote:

Flo80. I can see you’ve posted this question elsewhere and I’m not sure it’s fair to expect Lori, of all people, to diagnose you for bone mets. Best await an answer on your other post, but more particularly from your medical team.If you want my opinion, I’d suggest you are suffering from the side effects of your drugs.



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jan 25, 2020 12:28PM LoriCA wrote:

Flora I think TT is correct that it sounds more like you are dealing with neuropathy, it's nerve damage, formally called CIPN -chemo induced peripheral neuropathy, especially since you say that your hands are numb. It's one of the worst side effects of taxanes, and is often the reason people need to discontinue treatment. Mine didn't start bothering me until after I finished my first round of taxol, so I had never thought about icing during my infusions. The second time I did taxol I made sure to ice my feet so it didn't get worse (I only have problems with my feet, not my hands). Many of us are prescribed gabapentin or Lyrica for neuropathy. Those two meds are specifically for nerve pain.

Herceptin can cause intense pain in legs, hips, knees. So can hormone/endocrine therapy. Claritan (loratadine) has been helpful for many with that kind of bone pain. It's a tip I learned here on BCO. These boards are filled with people complaining about bone and joint pain from treatment.

Bone mets very rarely show in feet and hands, which is why feet and hands aren't typically included in scans. A "full body" PET/CT scan only goes from the base of the skull to mid-thigh. Bone pain and numbness in feet and hands is almost always due to neuropathy from treatment.


IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)

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