IBC lounge: roll call, support and just a good place to hang out
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LoriCA I hope you get a fine new oncologist and fast ! it is awful to feel there is no understanding, and you are not a team. Been there ...
Valstim - wonderful that you are still NED, so sorry bout the arthritis. Is it worse in the winter ?
I took my husband to the emergency room of the cardiology hospital yesterday, (after my chemo !), and they are keeping him over the weekend, waiting to get him in for a coronarographyscan. It's kind of empty here at home without him, but I joked I am going to heat up the credit cards while he is in the hospital: an ermine, some diamonds, a pedigreed puppy ... he is happy as long as he has lovely nurses to flatter him. But still ...
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Oh Amarantha I'm so sorry about your husband and hope it is nothing serious. It is even more horrifying when your spouse has significant health problems and you're trying to deal with cancer. My husband is my rock, I couldn't get through this without him, and when he had surgery for skin cancer earlier this year my mind didn't even want to deal with it because I was so frightened. It's just too much for one person to deal with. Big hugs for you and many good thoughts for the both of you.
TT this situation made me think about people who may not be as intelligent and educated, the ones who say yes to whatever their doctor says and probably don't read their reports because the language is intimidating and don't take the time to learn about the disease on their own. Not feeling like I'm being listened to has been the biggest issue, I'm metastatic so my relationship with my MO needs to be a long term partnership. I don't blindly follow anyone, I need my questions answered and I need to understand the basis for treatment decisions.
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Hello, friends. The move from California to Colorado is behind us now, and the hubs and I are scrambling around unpacking, unpacking, unpacking. What a complete mess. No window coverings yet; we have sheets and towel taped up for sun control and privacy, and our two little blind dogs are very confused! As I was putting my china away I was thinking "no earthquakes here!" At the same time, my heart breaks for my California team I left behind. They're dealing with the horrific Thousand Oaks shooting and now the fires. Some of them have been evacuated from their homes, and yet they still report to the fire line and EMS to manage the mess.
LoriCA, I'm so, so sorry you're dealing with "biopsygate" (good one, TT). Are you close to UC Irvine to find a University-based oncologist?
Amarantha, yay for feeling great, but you and your hubs need a break! Hoping that his stay in the hospital reveals nothing more sinister than heartburn or a hangnail.
Good wishes and hugs coming everyone's way from Colorado this weekend. SB
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SB good to hear that you are in Colorado, I had a feeling that you may have lived close to the Thousand Oaks area and was very worried. Moving is so stressful, don't push yourself too hard and enjoy your lovely new home in beautiful Colorado.
Yes I'm in south OC so UC Irvine is close but both of their infusion centers are further north and more than an hour away from me. Not sure I want to leave Mission, I absolutely love everyone there (except my oncologist), they are so warm and caring and the staff in every department does everything they can to make me feel comfortable no matter why I am there - during my port surgery one of the nurses grabbed me a latte at the coffee cart so it would be waiting as soon as I got out of surgery! And did I mention the toasty warm blankets they always use?? - so I really want to stick with someone affiliated with Mission. I wouldn't do well in a place that felt like an assembly line. And most of the Mission oncologists have spent time at UC Irvine, at a minimum for fellowships and residencies. Plus it's only 15 minutes away, so it makes my life easy, and their brand new state of the art comprehensive cancer center is slated to open next summer. Unfortunately most of Mission's oncologists work out of the same office across from the hospital and it wouldn't be appropriate to ask another doctor in same office to consult, that would make an awkward situation for all of us. Not sure what I'm going to do because I really don't want to change hospital groups when I'm so completely happy with absolutely everything else at Mission. I also have the highly-rated Hoag Cancer Center in Irvine too. I'm fortunate to have so many outstanding choices in this area.
Maybe I'll talk to Mission's Nurse Navigator about my dilemma while I'm there for my support group meeting next week.
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LoriCA, the nurse navigator idea is a good one. She will help you through this rough spot in the road. I can sure understand how you wouldn't want to uproot from a facility that's so close and provides good care. I had all my surgeries/chemo/rads at the hospital in Thousand Oaks, and my physician team were mostly trained at UCLA. I was happy to NOT have to drive to the Westwood UCLA facility--the traffic, distance, parking $$$, would have been unneeded stresses at a time when I didn't need more stress.
We woke up this morning to beautiful, deep, gentle snow. I'm off to find a hat and boots and re-learn how to use a snow shovel!
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SB - only another Californian would appreciate the desire to stay as close to home as possible and not deal with the stress of traffic.
After living all over the country I can say that unless they've lived/worked in Los Angeles/SoCal or Manhattan/NYC area people don't know the true meaning of "traffic". I used to be able to drive down to San Diego in an hour easily, even during rush hour to have dinner in the city, but the past couple years it has taken a minimum of 3 hours every single time, even in the early afternoon. One time it took me 5(!) hours to get to L.A. when it should be just over one hour. How are you supposed to plan around that? Just running errands around town exhausts me because the traffic is so bad anymore. It was hard enough to deal with it when I was healthy. I give thanks every time I drive to an appointment that I have such good care only 15 minutes from home, and the furthest I have needed to drive is half an hour only because I got my first scan at a Hoag-affiliated facility and prefer to have the same tech read my scans each time.
Enjoy that beautiful snow and don't push yourself too hard with the shoveling!
Lori
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Meeting with oncologist actually went well today, I felt like he had taken everything I said at last meeting into consideration and we had a very good talk. Haven't ruled out getting second opinion, but I'm not as angry as I was last week and I'm okay with our plan.
Biopsy showsi t is a recurrence of primary with same pathology, still strongly HER2+ and high Ki67. We've agreed that I'll go back on chemo right after Thanksgiving & hope that response is as good as it was last time. He wants to do Taxol again since I had such an amazing response to it last time. The scary part is that I tolerated it well for a couple months and then all of a sudden I didn't with Grade 3/4 diarrhea, but he promised that if I have a hard time with it again he'll take me off it immediately.
He also wants me to do rads, but right now it would be over a very large area and it still wouldn't address the lymph nodes in my abdomen and above my collar bone (which we still don't know definitively that the are cancerous). The hope is that chemo will shrink the primary tumor down enough to limit the area that would need radiation. I'll be meeting with RO to discuss everything on that end. MO actually thinks I have a fair chance at achieving NEAD since the rest of me has responded so well.
The upside to having all consult/scan/test requests marked Stat - IBC is that everyone manages to fit me in immediately. It's nice to not have to wait for an appointment, but in a way it's also scary when it feels like everyone drops everything to fit me in. It's been a bit of a whirlwind the past couple weeks.
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So pleased to learn that you have a plan Lori. And that you getting on with your onc. They are not people to ditch lightly. I'd a decision on rads could be better left to a later date.
Certainly I'm hoping the taxol goes well for you. Going off a drug that appears to work is not the best. And, yes, IBC gets you prompt attention for appointments, but that's a good thing IMO.
Keep us posted and all the best with this new phase.
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After all of the tests and scans and biopsies and multiple discussions, we agreed this morning that I would start taxol AND remain on Herceptin and Perjeta. The H&P did a good job resolving my liver and made fantastic progress with my bones, so I'm happy to be staying on it. It's this darn stubborn IBC that didn't respond to it despite still being strongly HER2+. Was glad to start chemo this morning because the pain has gone from an annoying level to real pain over the past two weeks.
Hope my US friends had an enjoyable Thanksgiving. It's our tradition to camp in the desert (we were opting outside long before it was a trendy hashtag), and although we postponed one day due to rain I still managed to spend 3 days out in the wild. It was chilly and very windy and took a lot out of me, but it was awesome to hang out in nature for a few days and really glad I was able to do so before starting chemo.
How is everyone doing?
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That's pretty good news Lori. What a chemo saga you are enduring and how good it must be to be getting relief from it.
Nature first, then chemo. The perfect sequence.
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TT the only way to make the sequence even better is if I can manage to get out in the wild during chemo this time. It's my goal.
Had consult with RO today, she wants to hold off on radiation for now. Doesn't want to burn skin that is already compromised, and since radiation is a tool that can only be used a limited number of times, she thinks it's better to wait until really needed such as no longer responding to systemic treatment. Since it responded so well to chemo the first time, she's confident that it will again this time & that systemic treatment is the way to go for now. Big sigh of relief because I wasn't really looking forward to it and I'm glad we're on the same page about it. This round of chemo is going okay so far, just some fatigue. Worn out from having so many doctor appointments these last several weeks too, glad to have a break until my next infusion.
amarantha we haven't heard from you in while, hope you and your husband are both doing okay.
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I do not have IBC but I have early stage breast cancer. Im a mentor to a 74 yo woman who was diagnosed with IBC 6 months ago. She had dcis approximately 7 years ago It was removed with clean margins. She received radiation and femara . She did great over the past 7 years. She was diagnosed 6 months ago and started chemo within a month. She did not respond to chemo. She was in and out of the hospital while on chemotherapy. She did complete her chemo but the scan showed no regression in the cancer. She had a mastectomy on November 23rd. They were unable to remove all the cancer. The oncologist spoke to the family and he's recommending hospice. He reports he only did the mastectomy to relieve pain. Currently she is still in the hospital and she isn't experiencing any pain. The family opposes hospice and is pushing for Rehab. I am an occupational therapist. My knowledge of IBC and treatment are nominal. Im trying to be supportive and a good listener. I welcome all feedback.
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I do not have IBC but I have early stage breast cancer. Im a mentor to a 74 yo woman who was diagnosed with IBC 6 months ago. She had dcis approximately 7 years ago It was removed with clean margins. She received radiation and femara . She did great over the past 7 years. She was diagnosed 6 months ago and started chemo within a month. She did not respond to chemo. She was in and out of the hospital while on chemotherapy. She did complete her chemo but the scan showed no regression in the cancer. She had a mastectomy on November 23rd. They were unable to remove all the cancer. The oncologist spoke to the family and he's recommending hospice. He reports he only did the mastectomy to relieve pain. Currently she is still in the hospital and she isn't experiencing any pain. The family opposes hospice and is pushing for Rehab. I am an occupational therapist. My knowledge of IBC and treatment are nominal. Im trying to be supportive and a good listener. Is it normal for IBC to spread so quickly? I welcome all feedback.
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Hi jo6359, I'm sorry to hear about your friend. It is true that at Stage IV all treatment, including mastectomy, is only palliative - to relieve symptoms such as pain or help an organ that isn't functioning properly - because there is no cure for metastatic breast cancer. All we can do is try to push the cancer back enough to give us a good quality of life. It sounds as if her cancer has metastasized (Stage IV), and it's important to know where it has spread, I'm guessing there is organ involvement if they are recommending hospice already (and the fact that she's currently hospitalized), and it's either so extensive in her organs that it's causing problems or her health//age and failure to respond to chemo gives a very poor prognosis. Treatments at Stage IV only get harsher and more invasive, and at some point all of us Stage IV people have to make the decision if our bodies can handle any more and if the side effects of the treatment will do anything to improve our quality of life. When the doctors recommend hospice, it's because they don't think further treatment will do anything to improve her quality of life. It can't be cured, it's only about how well we live until we die.
IBC is very aggressive. Mine seems to be more aggressive than most and I can tell you how quickly it spreads, right before my eyes, twice already in one year, so fast it will make your head spin. Mine had spread extensively through my skeleton, liver, chest wall, into my brachial nerves and my skin within days of diagnosis. Although mine responded well to chemo the first time, within a couple months it came back with a vengeance. It's a stubborn beast, but I am much younger than she is, in good shape and healthy enough to keep fighting it for now. For someone who is older and in poor health, it's a tough battle. When a patient is older, frail, in poor health, there's a very real risk that more chemo could kill them because their body can't handle it, if the mets are in the lungs, liver, brain, surgery to relieve those symptoms is also very risky in an older patient who is already in poor health.
It's hard to discuss treatment options without knowing her pathology, where the cancer has spread, what chemo she's tried, and what symptoms she's having, but IBC can be very stubborn. Despite mine being strongly HER2+, it doesn't respond to Herceptin and Perjeta even though most (but not all) of my mets respond to it. Sometimes they will try a different chemo if she became resistant to whatever they tried the last time, but it depends on her overall health and prognosis. I say this with all sincerity and in a caring way, the family needs to let her decide what she wants with the guidance of her doctor. It's cruel to push a person to do more horrible treatment when there is no cure, it's only worth going through more chemo/surgery/radiation etc if there is a strong possibility that it will give her many more GOOD months of life. No one should feel pressured into spending their last days going through horrible treatment just so the family can feel like they've tried everything, and that's the point of hospice, to let her live out her final days in comfort. I know it's hard for family to feel like they are giving up, but it's a decision that should only be made by her after discussing with her doctors. If the doctors say there is nothing else left to do or that there's no benefit to going through another harsh treatment, urge her get a second opinion if you wish but please don't push her into doing more treatments if she doesn't want to. There is no cure for breast cancer that has metastasized.
If she hasn't already, now is a good time for her to complete an Advanced Directive (and DNR if she wishes) so that she has a legal written document that spells out her treatment wishes, what life sustaining treatment she is/isn't willing to have.
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jo6359, LoriCA has given you all the advice I could give and more.
Can you persuade the family to have the patient's best interests at the heart of any decision they make? This is often very hard.
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lori and travel- thank you very much for the feedback. I know the oncologist have tried several different types of chemo with her without any success. I have spoken to the patient at length and she's ready to go. She never wanted to pursue chemo. When she was diagnosed with IBC she just wanted to go naturally and be comfortable. The family quite frankly wouldn't allow it. Her granddaughter is in charge. I'm trying to gently encourage the granddaughter to listen to her healthcare team and most importantly listen to her grandmother. She isn't in a place to hear it. Her grandmother has always been a very vibrant and healthy woman. Scans have not shown any metastasis as per granddaughter. I do not believe the granddaughter is lying. Unfortunately I believe the granddaughter is in denial. My concern is the patient will not be able to make decisions for herself much longer. Her doctor is admitting her into rehab tomorrow. I know she isn't a candidate for Rehab. She just wants to be at home with her dog and family and pain control when needed. So I will continue to try to encourage her granddaughter to listen to the healthcare team.
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That's very sad to hear that her wishes aren't being respected. Does her granddaughter have the legal right to make healthcare decisions? A rehab won't even be able to provide proper pain control for end-stage cancer. I warned my family that I will haunt them if they don't let me go peacefully when I decide it's time, but thankfully I've had the time to have extensive conversations with several family members and appointed several people to enforce my wishes if I'm not able so the emotional burden isn't entirely on my husband. That's why it's so important to get the paperwork in place and on file. If she hasn't been legally judged mentally incapable of making her own decisions I don't know how the hospital could possibly override her wishes and do what the granddaughter wants instead. Maybe it comes down to money and her insurance won't cover in-home hospice (if it covers rehab, I would think it would cover in-home hospice)?
I'd be really surprised if the cancer hasn't spread after 6 months of not responding treatment. IBC is always at least late Stage 3 if not already Stage IV by the time there's any sign of it. I was given 60 days if it didn't respond to chemo. But I think I'm the only one with a de novo diagnosis here, I think the others were Stage 3 when caught or their IBC was a progression from an earlier diagnosis, so they may have more insight on that. I have a particularly aggressive and stubborn version of IBC and sometimes that colors my opinions.
Why is she still in the hospital (or rehab), what health problems is she having that are requiring round the clock care?
This story breaks my heart, it's my biggest nightmare.
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Has anyone heard from amarantha? I'm getting very worried about her.
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she had a mastectomy the day before Thanksgiving and was discharged from the hospital on Thanksgiving Day. Within 24 hours she was falling and extremely confused. She was rushed back to the hospital where she was diagnosed with three different bacterial infections. Upon admission within six hours she fell while walking to the bathroom. They forgot to put her on Fall precautions. She fell and suffered a concussion. The lump on her head was approximately 5 in in diameter. Now they're doing CYA. Now the hospital is trying to appease the granddaughter because they're concerned over a possible lawsuit. I'm deeply concerned on several levels. The first of course being the patient has made her wishes known to family and those wishes are being ignored. Secondly, as a healthcare professional, I believe in the right for patients to make their own decisions regardless of my beliefs. Thirdly, I would not want my family and friends to ignore my wishes. You seem to have everything in place.
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That poor woman! I hope you continue to be a good friend and advocate for her, but I understand you're in a difficult position not being a family member. With any luck, the rehab facility will quickly realize she needs to be in hospice and urge the family to do so. Sounds like the only other option would be for her to retain an attorney, and that would be a long ugly mess.
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lori- I visited the woman this evening. She is so sweet and lovable. I personally believe she has brain Mets. She is very calm and truly wants to return home to be with her dog. One minute she talks about the cancer being removed and then the next she speaks about wanting to pass at home with her dog and family. She is calm and serene. She really loves her dog. I've been in a funk for the past several days. Today I finally realized I'm sad and a little depressed because I know I'm losing a dear friend. I'm also angry because she's going so quickly. I'm crying as I write this text because I'm coming to terms with the loss. I'm not being a therapist now. I'm just a person who's losing a friend. Quite frankly it hurts. You have helped me a great deal. It's greatly appreciated.
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Glad to know I could help a little. There is a section specifically for Family and Caregivers of people with a Stage IV diagnosis, since most of the people here with IBC are not Stage IV you might find additional help here https://community.breastcancer.org/forum/144
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lori-thanks. Tomorrow I'm going to the hospital to visit with my friend.
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hi all. Last week a red rash appeared on my right breast. I was thinking it was nothing. Then it didn’t go away. Didn’t change. I went to the gynecologist and I had a bacterial infection and she said the rash could be from that ( not sure how). She gave me cream and some antibiotics. The rash had not changed and my both my breasts became heavy and sore. She found a “lump” on my upper rib bone where she said the nodes are and has ordered a mammogram and a ultrasound. I’m 35 and worried that I should ask for a skin biopsy as well. What do you recommend?
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Welcome Jillleen. A skin biopsy is sometimes carried out, but IBC nearly always only presents in one breast. And has a classic "orange peel" look.
However, an ultrasound and a mammogram are a good start for diagnostic purposes and why not wait for these results before going further.
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Hi Jilleen, not to contradict my dear friend Traveltext, but IMHO a skin biopsy should be performed. Mine did present in both breasts, although eventually it was only the left breast that showed cancer in the biopsies and PET scans. A few years later however the right breast became the focus of attention. Not to contradict my dear friend Traveltext, and not to make you paranoid, but in the case of IBC, an ultrasound and a mammogram can typically show nothing.
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Sorry to have been away so long folks ! We are all better now, husband has been repaired with a stent (we joked he needed a spring changed) and my mastectomy is slowly getting closer to healing. I still have visiting nurses every day to change a bandage with stuffing - (mêchage) not sure how it is said in English. And have now had four sessions of Halaven (Eribulen) The long time I was off chemo let the skin mets advance rather scarily around the back of the bosum under the arm and down the abdomen, but it shows signs of slowly responding to chemo. In the meantime, I continue to feel mostly happy, although tired, and am continuing my fun opera-reviewing voyages. Best wishes to all !
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Sorry Jilleen, amarantha carries more IBC experience and I will defer to her advice on the biopsy. I really was only wanting you to follow your suggested protocol before having a skin biopsy (called a punch biopsy). I'm still waiting to hear from you about whether you have the "orange peel" look. I'm still putting money on you not having IBC, but you are in a good time frame to find this out, so don't panic.
Anyway, that drew amarantha out of the woodwork. So good to hear from you, we're beside ourselves with worry for you. Good to hear that you are being treated and voyaging to the opera as well. And that your hubby has had his spring changed. I always marvel at modern medicine, it's not for want of trying (or drugs) that we get to keep posting here. I'm hoping the chemo will continue to clear up your skin. Feel free not to post pics here! Best wishes.
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Just checking in. Yesterday I got the result of the CT scan. In June I started with 4 tumors in the lungs. The latest scan showed only one tumor, the biggest, is still there but stable. The radiologist says that he dares to do a biopsy (it's at a very difficult spot). Both MO and I said: no way.
I can finally relax a little. I was doubting about celebrating my birthday but between the scan and the results I managed to have a party with my family, great food and good friends. Ten years ago, when my adventure with cancer started and especially the last two years with IBC, I didn't expect to be here and celebrate my 50th birthday. I'm so thankful for medicine, and this group for keeping me sane.
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Jilleen, hehe, I'll come right in the middle - a mammogram is mostly useless in detecting IBC but an ultrasound may detect skin thickening and it would also see if that "lump" is an enlarged node or something else. Skin punch biopsy is the only way to tell for sure, but unless there are other symptoms of IBC (primarily orange peel skin, skin thickening, and heat) they won't typically do an invasive procedure right off the bat because chances are very slim that it is IBC & if you're in the US your insurance company might not approve without good reason. Anyway, in the US if you've never had a mammo or it's been a while, they will send you for one as a matter of course even though it won't help detect IBC. Unless your symptoms continue to worsen quickly, I would wait for the results of the ultrasound. Should you have further questions about IBC they really should be posted in Not Diagnosed But Worried as this section is for those of us who are already diagnosed and dealing with IBC. We do keep watch over there for questions about IBC.
Amarantha so good to hear that both of you are doing well. I've been worried about you, thanks for checking in. Wonderful that you are still continuing your opera travels.
MoreShoes congratulations on the good scan, sounds like your current treatment is working well. What are you on now? Happy 50th!
Disappointed and worried that the chemo isn't working yet, last time I had an almost immediate response. I'm telling myself it's tumor flare and it's too soon to tell, but my skin mets are angrier & growing and look like they are getting close to ulcerating again, this huge lump on the side of my breast and under my arm is increasing in pain level (up to 7/10 when it was only 4/10 a few weeks ago) and I'm pretty miserable. And now I have new spots on my abdomen below primary breast that I'm not sure yet if skin mets or herceptin rash. According to my husband I've become quite cranky, but we've had a lot of rain this past week and hopefully some sunshine and holiday decorating will straighten me out.
I've still been getting out and about, it's holiday party season after all. Glad the chemo hasn't affected my appetite yet!On the up side I've had minimal side effects from chemo so far. She did a 90 minute drip on the Taxol (3-week dose) and that seemed to work to minimize the SEs even though it makes for a very long day (90 minutes for Taxol, 60 minutes each for Herceptin and Perjeta, plus pre-meds, flushes between each drug, and a bag of saline at the end...and that doesn't count time for vitals, lab work and consult before we even start on infusion haha!!). I'm only a little more fatigued than I was on H&P alone, so far so good. Now I just need it start working. My mets are doing fantastically on H&P, but we can't get the primary IBC under control. My insurance company approved genome sequencing so we can see if I have a mutation that qualifies for a clinical trial and I should have those results before the year is over. I just need this chemo to work so we can get to that point.
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Thanks for checking in MoreShoes. You are a true TN IBC survivor and I'm so pleased that the end of this difficult year finds you in good form.
Lori, I hope the holiday season can distract you somewhat from your pain. I'd be a bit cranky, too, although I'd have to say that, despite your pain, you've given a full and frank account of your treatment and it's ramifications and I've learned a lot from you. I hope genome testing qualifies you for a trial. Meanwhile, maintain your attitude and party on.
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Thanks TT, though I'm not sure what there is to learn from me other than the fact that apparently some of us can have their mets respond to HER2+ targeted therapy but not their primary cancer.
At least I think next time he'll believe me sooner when I say I think there's something wrong, even though it shouldn't have happened and especially not that quickly (the primary recurrence) when by all outward appearances I was doing so well. Not sure how it's going to factor into my treatment going forward, like my MO keeps reminding me, I can't stay on a taxane chemo forever (at least not if I want to have any QOL). Once we get things under control again I told him I'd like to look into Kadcyla, which would be the next line of treatment for HER2+ and is a chemo combined with the Herceptin and Perjeta and apparently very tolerable. I think that might be the answer to buy me more time because the rest of me is doing so well on H&P. I noticed that he added the drug info for Kadcyla to my patient portal so I believe he agrees. Hope everyone is having a fantastic weekend!
Lori
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