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All TopicsForum: IBC (Inflammatory Breast Cancer) → Topic: IBC lounge: roll call, support and just a good place to hang out

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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May 13, 2018 04:52PM LoriCA wrote:

Traveltext I had a feeling you did something along those lines hehe. Bet it was fun while it was still fun. I write about exploring remote locations in the Mojave desert. It's physically demanding work, completely off the grid for days at a time, and I'm not sure if I'll ever be able to do it again. It was a dream after leaving a successful 22-year corporate career, and somehow I managed to make it happen against all odds. Hurts like hell to think I may not be able to ever do it again, but getting back to the wild is my motivation for healing. I grew tired of all of the travel I had to do in the corporate world too, but doing it while spending time in nature is entirely different for me.

As for living full-time in an RV, my husband loves to adventure with me and he knows it would satisfy my urge to explore and give me an opportunity to continue writing, although the adventures wouldn't be quite as extreme. We wouldn't be traveling to cities or campgrounds, we would boondock and sleep under the stars as much as possible. It would make both of us happy, as long as I have comfortable living arrangements for the bad days. But I'm the practical one - even if I could figure out the logistics of how to attend treatments and get my meds while on the road, in all honestly I'm afraid of being lucky enough to outlive the money and leaving him (or both of us) destitute haha!! We are too young to collect on retirement funds just yet and we've already lost my income. Health care premiums are no small sum (not to mention co-pays, etc.), so the idea of doing odd jobs while on the road just to put food on the table and buy gas won't work. It would require a substantial hit to our savings annually. There's always the concern of what we do if my cancer suddenly advanced again, especially if I go downhill as quickly as I did the first time. And more Stage IV talk here, but the plan was to sell this house and pay cash for a smaller retirement home with no worries, whether for both of us or just him. Using the proceeds from this house to buy an RV and finance living on the road, with no income (or possibly a modest freelance income), would jeopardize his future. I'm the one who had the corporate career with the executive-level pension and solid 401k, he followed me around the country changing jobs with every move until we decided to stay here for a while and I left the corporate world. My biggest concern is making sure that he is okay financially after I'm gone, and I don't want to do anything that might jeopardize it (more than the cancer already does). His only concern right now is spending quality time with me and making me happy, and he doesn't want me to worry about what might happen to him after I'm gone.


sbelizabeth I love taking the train down to San Diego! It's awesome to ride along the ocean while avoiding the traffic, such great views. Last couple times I drove down to San Diego it took me 3+ hours for a 50-mile drive, ugh. It's become so much worse the past few years - I had a speaking engagement at 7pm on a Tuesday a few months before my DX, thought that leaving my house at 3:30 in the afternoon would give me plenty of time to grab a fast bite when I arrived, but I barely made it through the door before I had to go on stage! I never even thought of taking the train north as far as Washington, but that is a great idea. I've often wished there was a train between LA and NY so I could take it home to visit my family (I absolutely hate flying these days).

I agree we are very spoiled with the weather here, but I'm laughing because I was just trying to explain to someone that we may not see the sun for several more weeks here in "sunny California" hahaha. Unknowing tourists can be very disappointed by our beach weather this time of year. But I am very glad that it keeps the temperature down while other parts of the state are heating up to triple digits. How wonderful that you've taken in some rescue dogs!

Happy Sunday all!

Lori

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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May 13, 2018 04:57PM Fran2014 wrote:

Hi All-I just wanted to wish a very Happy Mother's Day to all the "moms" out there. I got to enjoy a lovely breakfast with my mom and my daughter and realized how blessed I am to have them both! Also, for those of you with sons, I know you will appreciate this-my 20 year old actually "planned ahead" and sent me a gift since he is still away at college (see, I guess they really do grow up at some point-LOL). Hope everyone is hanging in there!

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May 13, 2018 06:06PM Traveltext wrote:


LoriCA, I agree, nature is where we need to be as much as possible (that is after being curled up in a warm bed). Good on you for finding an interest after your career, and one that was so completely different. Surely an RV trip would be a great experience, allow you to do more writing and photography in relative comfort, and with all the good wifi around could your hubby not do his thing? But, I'd suggest doing a trial run. Rent a vehicle and get out there for a bit to see if this really is a thing for you both. Then you've not burnt your proverbial bridges.

The discussion you had on planning your future is one we don't hear enough of outside the Stage IV boards, and good on you for sharing your thoughts here. There are so many variables with health and with relationships and with financial matters, that each cancer patient has to weave a way through the quagmire to arrive at a plan.

Like you, I'm a great planner, and although not Stage IV, I do have two cancers and have had two strokes. To this end, I have wrapped up my career, planned estate matters, got the financials in hand, and gone reduce, reduce, reduce with all the possessions, personal papers, memorabilia and all the stuff that I know my kids would not want to be burdened with. I've never felt better, physically or mentally, and am living life to the full. I particularly like BCO where, for some reason, men don't come, so I can be the resident male bc guru. But I write for a lot of other cancer websites, have a high profile in the local community of environmental topics, and get plenty of time in our large garden. I know we are at all different stages with our disease, but I hope we can all reach an equilibrium with life apart from the worries of this shitty disease.


Fran, I get the joy you've experienced from the actions of your thoughtful son. He's on target for growing up way faster than the statistical average in the modern era!


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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May 14, 2018 11:27AM Valstim52 wrote:

hello all. Amaranths so glad you have you r opera trips planned. What a treat. Hoping your treatment kills all those cells. Welcome to all who have joined this club.

I’m now 2.5 years out from stage 3 triple negative with multiple node involvement. So far NEAD, but fighting side effects from radiation induced stroke. I’ve lost a lot of my mobility, though therapy has helped. I no longer wake up thinking of recurrence, but what pains I’m going to deal with for the day.

That being said, I look forward rather than backwards. At least this week.

Va



The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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May 14, 2018 06:40PM Traveltext wrote:

Val, nice to have you back here. I'm sorry that you are still dealing with SEs. Fortunately for me I'm back to normal six months after the event.

I have a cardiologist telling me my blood clot stroke was likely related to the tamoxifen and you are told your stroke was because of radiation. Who is right or are they both right? This is a confusing topic.

Would you be able to tell me more about the type, extent and side effects of your stroke?


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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May 15, 2018 09:15AM - edited May 15, 2018 09:15AM by Valstim52

Traveltext

My stroke was a blood clot stroke as well. They say my carotid artery was damaged by the rads to my neck area and caused a clot. Ofcourse all of this is after the fact. Since I'm TN no tamoxifen for me. My immediate side effects were complete numbness on my bc side. I was given the clot buster drug and my numbness dissipated, but was replaced by excruciating pain. It took a month of therapy to get relief. I"m left with a weakness when I stand longer than 10 minutes. I can't bear weight for long. I'm not overweight, or it would be worse. Its hard now to keep my weight down as I was very active prior to this event.

During the event, I could not speak. I understood what was being said but was unable to utter a sound. It was worse than my BC diagnosis. No speech problems or confusion now. Just the nagging pain in the leg. Therapy helps. I skipped it a few times and was unable to get about.

In my case, I don't think the Dr's knew what or why for my stroke. I did not have high blood pressure, no high cholestorol. they did all agree that this has been seen in patients that had rads to include their neck area.

Val

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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May 15, 2018 02:04PM LoriCA wrote:

Val I'm so sorry to hear that. It seems they are only recently realizing how much damage to the carotid artery is done with radiation to the neck/clavicle area. Scary that so many of our treatments involve weighing the risk of other serious and sometimes fatal complications.My mom had multiple strokes when I was a teen (due to birth control meds back then) and I've seen first-hand how hard she had to fight to regain function (she also lost speech). You would never know today that she had multiple massive strokes when she was younger. Sending you lots of good wishes for your continued recovery!

Traveltext I did propose renting and doing a trial run to see if it's something that would even be workable for him. He's never spent a single night in an RV, while I've at least spent 10 days at a time living in an RV for several years while working for clients and understand some of the challenges. But there are bigger things to worry about first - I still have at least another 9 months of Herceptin/Perjeta infusion every 3 weeks if all goes well, I'm still on opioids that require picking up a paper prescription from my MO (they are very strictly controlled in the US, not much room for play), actually there are too many logistical issues to count at this point. In the meantime I'm using the idea as motivation to get him to help purge a life-time of accumulated possessions hahaha!

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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May 16, 2018 04:58AM Traveltext wrote:

Val, Thanks very much for the explanation of your terrible ordeal. What a time you've had recovering and I'm sorry you have that lingering pain. You're right, there's lots worse things around besides BC.

Lori, your situation is now clear to me. Best plod along and get your treatment in order before adventuring away. But sure, using the idea as a way to get some action in the possession reduction area is a bonus.


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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May 16, 2018 01:02PM Valstim52 wrote:

Thank so much LoriCA and Traveltext. All being said I still have a pretty good quality of life. It’s so easy for me to dwell on the ailments, but most days I do more.


Va

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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May 16, 2018 04:32PM Cat_Warrior9 wrote:

hi everyone! I’m new here, but have yet to talk to a person that has had IBC. I just got diagnosed and have only had one chemo so far. I’m fortunate enough to have caught it as early as you can catch ibc and I’m also being treated by the best IBC dr, the famous Dr. Massimo Christofanilli. So all of those things are super blessings. I’m completely still not having the diagnosis sink in and it seems that no one gets my type of chemo for some reason. FEC-T. Did anyone else have this type of chemo? I feel surrounded by love and breast cancer s suppirt but alone in my diagnosis and treatment. I have friend so and family that have looked up the internet’s IBC and a swear they think I’m im to die. I have full hope that i will make it for the first round but I’m a im afraid of reoccurances

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May 16, 2018 07:04PM Traveltext wrote:

Welcome Cat Warrior. Sorry you have to be here, but as you go through treatment, drop by to ask questions. I've had your chemo and I'm four years past treatment. And still kickin'.

How about filling in the diagnosis and treatment section of your BCO membership so we can see more about the type of BC you have. That makes our comment more meaningful.

Good luck with your continuing treatment.


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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May 18, 2018 03:33PM LoriCA wrote:

Hi Cat Warrior, sorry you find yourself here, but there are great people with a lot of knowledge and support here.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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May 19, 2018 04:10PM sbelizabeth wrote:

Hi, Cat Warrior. My cancer was IDC with inflammatory features (lots of tumor emboli in the skin, with peau d'orange and redness, but not enough of the breast affected call it IBC) and my sister's was full-on, shut-the-front-door, IBC. Mine was dx in 2011, my sister's in 2012. We are both doing very well. No recurrences so far.

There is HOPE after an IBC diagnosis, so don't let your family and friends give you the sad face treatment. Earlier diagnosis and good treatment makes a big difference in outcome. You ain't dead yet, not by a long shot!

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, 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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