IBC lounge: roll call, support and just a good place to hang out
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Amarentha, what a co-incidence! I peed my pants yesterday. I was so dizzy from my pain meds that I had to take 5 min. on the couch and all of a sudden - ooops.. I consulted Dr. Google - oxycodone, which I´m on, can cause incontinence (https://www.health.harvard.edu/bladder-and-bowel/medications-that-can-cause-urinary-incontinence). I´m getting an idea of how pathetic going down hill with cancer will be.
Lori, I´m on no chemo. The MOs have finally come to the conclusion that the drugs they offer according to their guidelines have no effect on my cancer. I cross my fingers for you up-coming scans. How is your skin doing?
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ADDK, I think we need to form a club ! I think we might have many friends. My aunt who has had a stroke, and her husband who is blind, have contests to see how many wet-though underpants make their way to the line per day !
Hi TT, thanks for the link. Yes, you can be sure that as soon as I was able to get to a computer I searched google for answers like this. If losing bladder control is entirely to be blamed on morphine, then I am a happy camper. We'll soon see, scan and all, if the spine mets might also be a culprit, in which case hopefully a bout of radiation will give me my own back. In any case that was quite a shock to me ! I told my sister about it, and she said, if I had ever been pregnant, I'd have become used to it !
I think what made me bawl like a two year old, was the thought that this was a consequence of the fast-moving spine mets. A bit of panic if you know what I mean. Needless to say, I'm ravenous (and trying to remain so in a civilised way) for answers !
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Lorica I just re-read your very interesting message in answer to my incontinence question.
--quote LoriCA: " It's not uncommon for Stage IV people to deal with bowel and bladder incontinence, and it can be caused by a few things besides meds - spinal compression mets are a frequent cause, brain mets (which would be a big concern if you were HER2+), other mets in the pelvic region, certain chemo drugs, and apparently even hormone suppression can cause it. It could even be stress-related. You might want to keep a journal to try pin down the cause especially if you think it might be related to one of your meds. That would be best case and then a simple change should be enough to stop the problem. You should definitely discuss with your MO, especially if you have spinal mets. When is your next scan?" (unquote)--
Spinal compression is what I am concerned about. My oncologist could not get me a scan earlier than Tuesday. Even saying it was urgent. (crazy) Spinal compression would explain my pain and the losing bladder control both, wouldn't it. Well some treatment will have to happen for my spine. I return to hospital tomorrow morning at 10 oclock. 10:00 cannot come soon enough. I wanted to go back tonight, I was bawling with pain, I made my husband climb up the stairs and help me put the suitcase together, it was so hard for me just to pick up and fold a pair of pants. However, even though the hospital pain ward told me could come back any time, we could not figure out how to get a telephone call through, so I decided to tough it out for the night. It's hard to sleep though. Alain has had to put up with many full-out bawing my head-off fits, which is just so very unlike me. I'm becoming "incontinent" that way too !!!!
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HI Everyone, I'm new to the group. ADDK- you and I have similar timeline in the first diagnosis. I'm wondering in June 2018 did it come back? Or did you always have it? I'm NED right now. But the devil that is cancer is never far from my mind.
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Hi michelemk, welcome to the group! Sorry you are joining us because IBC is no fun at all, not that any breast cancer is but IBC can be so stubborn. I'm so happy to hear that you are currently NED and hope you stay that way.
I see that you are TN, which I know very little about other than they are still searching for effective targeted drugs for metastatic patients. Are you on anything now for maintenance?
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Hi Lori, yes I am TN and not currently on anything. After chemo, surgery and radiation (you know the usual - ha) I was on Capecitabine for about six months. Onc said it helped TN IBC in a trial in Japan. I was done with it in April 2018. All of it is so overwhelming. I have other friends that have/had BC but people don't know that IBC is different. Treatment is so harsh. And now I'm getting signs of Lymphedema. The fun never ends. But I am very thankful to be NED and I realize it is a blessing.
I see you are Stage IV. Were you diagnosed with IV from the onset? How do you mentally deal with it all? I'm sorry to be so direct, but I'm having a hard time.
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Michelemk, welcome to the group nobody wants to join. I see that you are TN - I´m Her2 pos. I had neoadjuvant treatment (chemo + targeted therapies), and it turned out I had extensive residual disease after surgery. I had barely finished my post surgery treatment (targeted therapy Herceptin for one year) in March 2018, before a small rash appeared on my mastectomy side. It was not until June (when the rash had turned quite large) that my MOs made the official diagnosis. I´m so happy for you that you are NED, so please don´t make our similar timelines worry you. I really hope that eventually you will find ways to enjoy that you are NED.
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Thank you ADDK for responding. I had negative margins after surgery. And I had one lymph node (from 19 they removed) with residual tumor cells. I'll pray for all of you! Are you from Denmark? I've been there and loved it.
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Michelemk, please don't ever worry about being direct with me, I'm usually quite direct myself haha! I have no problems talking about my diagnosis and treatments.
Yes, I was Stage IV de novo. I seem to have a particularly extra-aggressive and extremely stubborn version of IBC, lucky me. It was spreading so fast and had already done so much damage when I was DXed that they didn't think I would pull through and told my husband to call my family in. I made my peace with it then, although I was so sick and in a fog from morphine and fentanyl that it was all a blur. I made a spectacular recovery only to have it start running wild a couple months later, and now I'm dealing with resistance after resistance after resistance. Despite the setbacks I'm still doing so much better than I was 18 months ago, and better than I was just four months ago, so I'm very grateful for every day I get. The truth is, my emotions are all over the place. It's hard not to get frustrated some days when they haven't even been able to get me stable yet. Being HER2+ I was hoping to have a nice long run on Herceptin. But I'm otherwise healthy - I have several friends in my metastatic support group who have much less cancer than I do (fewer mets in fewer locations) who are in much worse physical shape than I am, so I know I'm very lucky with how well my body has been handling everything and I still have a lot of fight left in me.
We have quite a few here who are NED, so don't let us Stage IV people scare you. It's just that we have more to talk about so we can get chatty.
ADDK - the return of pain (just minor right now) and now the look of my skin has me concerned that the benefit of rads only lasted 3 weeks. It was great while it lasted, but it took so long to see any kind of response that by the time we were seeing good progress, it was time to stop and I wish we could've done more. If nothing else, it bought me time to try a different chemo drug, although I hate this waiting for scans before we can decide on my next treatment. I have the MRI tomorrow, then the PET/CT in two weeks. Once I get those new baseline scans we'll start the fun all over again.
Amarantha how are you doing? I know you're back in the hospital, any luck on finding the source of your recent problems? It makes me sad to think of you lying there in so much pain. Sending you hugs.
Lori
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LoriCA, thank you for your words. I can't imagine what you go through. IBC SUCKS! My wish for you and all of us is that we live happy for as long as possible. It saddens me to hear about some of you having pain and other problems. I will stay in the group, and offer whatever support I can. I've been looking for an IBC "home" and I think I found it
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We hope you stick around and visit often!
IBC really does suck, but they've made great progress with treating it in recent years and several people here can attest to that. We have quite a few who are several years out from their Dx and are doing well.
Pay no attention to me, my case seems to be an exception to the norm even for Stage IV de novo IBC. It's very stubborn, but so am I.
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Hello lovely people. I am realising how every little bit of treatment has somehow come about by the kindness and courage of strangers. Thank you, oh long line of courageous women going far back in time.
Tonight I have asked for and gotten oxygen. My total was not very low, about 92 percent, but I get sooo out of breath and would panick while trying to catch it The staff here really really want me to get a good night's sleep. My lungs will be "punctioned" on Friday. Will Friday ever come ??
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Oh amarantha, breathe deeply on your oxygen. All your friends here are looking forward to you getting through to Friday and well beyond.
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Amarantha, I'm unfamiliar with hospitals in France and I was curious as to how my French colleagues dress. So I googled "France Hospital" and to my horror, you appear to be in a somewhat out-of-date...perhaps antiquated...institution. Do be careful. If someone approaches with leeches or a red rubber enema bag, run like hell.
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OH When was this taken ?
I always wanted to have grown up in some previous century. Okay I am sleep typing.
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Lol...it's from 1915. And me too--living sometime in a past era, with the swishy skirts and slower way of life--oh, yeah.
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Amarentha, I hope that your lung procedure went well and has given you some relief. The staff at your hospital sounds amazing, I hope you have been dismissed, though.
Lori, I really like your attitude, your ability to appreciate that your radiation treatment worked if only for three weeks. I had no side effects from my radiation treatment, have no experience to share, but perhaps the symptoms you are having could be from your radiation treatment. Keep us posted on the results of your upcoming scans. I read your post on another thread about the study from Memorial Sloan Kettering. The results make so much sense to me.
I´m absorbed by pain in a health care system that is running in circles. Six weeks ago my MO said obviously chemo has no effect on my cancer, and therefore she referred me to the experimental department of my hospital. Last Friday the experimental department referred me back to my MO for chemo treatment. Well, my cancer is spreading like crazy, and I really don´t care about treatment options anymore. I just want pain relief.Hugs to everybody.
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ADDK, sorry to hear that you are still having pain issues.
Pain relief is the most basic right of those going through cancer treatment and you must appeal to the highest medical authorities to insure you get the meds you require. Don't be fobbed off. Sit outside the office of the person responsible until you get action. I'm shocked at their lack of compassion.
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I agree with TT here. Managing cancer pain is a complex process and the "war on drugs" hasn't helped. It's too bad that we have to advocate so loudly and persistently for pain relief, but there it is. When my sister was in the last stages of her breast cancer, even her hospice nurses were less than effective at controlling her pain and I was surprised they were so lackadaisical. She was in Chicago and I was in Los Angeles--now I wish I'd been at her bedside to raise hell.
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Traveltext and sbelizabeth, thanks so much for your kind words. sbelizabeth, what your sister had to go through breaks my heart.
They have now increased my Gabapentin dose, and instead of oxycontin I´m having a morphine patch. My upper body is so bandaged that I look like the Michelin Man :-) My left arm has tripled in size due to lymphedema. The hospital says it´s nothing, so I´ve found a bandagist to make me a compression sleve. The dr from the experimental unit just called to tell me that she is referring me back to the oncologists. Hmm... for the past six weeks or so I´ve been referred forth and back between those two. I guess the oncologists will offer me yet another chemo from their "list of offers", which I tend to decline. I don´t need the SEs from a chemo that they don´t now whether will have any effect at all on top of my pain. I still work full time, but have an appointment with my GP next week to have a sick note. I´m either in too much pain og too doped from pain killers to think clearly (I´m supposed to use my brain at work :-))
I have run out of treatment options, so it would be really uplifting to learn if at least any of you amazing people have any succesful treatment news to share.
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I'm sorry ADDK. I don't know if you have anything similar to our Right To Try laws here in the US, but if so I would try to get my hands on lapatinib. It's currently in trial for brain mets but it appears to cross a similar barrier with the skin.
Fingers on my right hand went numb a few days ago. At first I thought maybe worsening neuropathy, but my last dose of a taxane was 5 months ago and H&P alone is not supposed to cause neuropathy (although that may be debatable because some women swear they have worsening neuropathy while only on H&P for years). Then I remembered the *(%& tumor tangled in my brachial nerves and realized that's probably what's causing it. My MO did warn me that rads could shrink it right back into that nerve bundle and I might have problems. Really hope I don't lose use of that arm again.
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Lori, oh no, I´m so sorry for your numbness, and I do understand your worries. I agree that worsening neuropathy is not very likely. Will your upcoming scans show whether the tumor is causing the numbness? Cross fingers that this is not the case. Is your skin at least doing well?
Thanks for your suggestion about lapatinib. I was in so much pain today that I couldn´t drive and had to cancel three hospital appointments. The MO just called me and suggested - guess what - that we try lapatinib and H! Such idiots! I suggested this combo to one of the MOs half a year ago to which the reply in the usual arrogant tone was "we don´t offer lapatinib". It breaks my heart when on these boards I read about the struggles that so many people have with insurance on top of a terminal disease. On the other hand, I think that many people suffer unnecessarily and die too soon in a rigid public health are system. Sorry for my rant - I´m really angry right now :-)
Take care everyone!
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I'm glad they offered you lapatinib, it seems very promising for skin mets. If/when mine start up again I'm going to ask for it. I hope it works well for you.
Sorry to hear you're having such a hard time dealing with pain. That's one area I can't fault my MO, he works very hard to make sure my pain is as minimal as possible, even telling me at times that I need to rely on my pain meds more (I'm the kind who tries to tough it out until it's unbearable).
I'm holding off judgement on my skin. It's looking strangely mottled now. Of course the white areas are the scarring from mets that happened during rads, but I think it would be strange for redness to return a month after finishing rads and after my skin had already healed. There is some skin pain, different from the tumor pain. I'm just waiting to see if it's some kind of delayed reaction to the rads, but if it continues to get worse I'll need to push to accelerate a treatment change.
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Lori, I think you’re touching on an important issue regarding pain. I’m exaxctly like you, but in reality the idea is to keep the pain at a tolerable.level, because it’s harder to manage once it’s out of control. So during today I tried to add some additional pain killers (the ones I’ve received for “in between”), and I think it works. For the first time in a month I go to bed with minimal pain. Yeah!
After my rad treatments I was told that it could take months for the skin to normalize. What I’m trying to say is that the changes that you notice and the pain you experiencecould indeed be due to the rads.
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MRI showed skin thickening consistent with IBC, increased in degree of enhancement from the last one but that may be due to the rads. That darn tumor tangled in my brachial nerves is still larger than it was in June 2018. They believe it has invaded my pec muscle, I'm not sure if this is the same as the previously suspected chest wall invasion or something new. I'll find out when we do the PET/CT.
My MO wants to wait until we get the results of the PET/CT before deciding what we want to do. In the meantime I'm to start on a B-complex (1,6,12) and have specific exercises to do to try to repair some of the nerve damage I'm experiencing from that tumor. One of my biggest fears is losing use of that arm again.
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Lori, am I guessing right that your medical team are really on the ball with treatments. Are you happy with them? I'm hoping the PET/CT scan offers guidance.
I’m a bit worried for Amarantha and hope she chimes in soon.
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Am I happy with them? For most things I am extremely happy, but my MO doesn't specialize in MBC, let alone IBC, so sometimes that does concern me. I just recently realized that MD Anderson has a satellite campus at Scripps in San Diego. I talked to the Nurse Navigator who sometimes facilitates my MBC support group about going there for a consult. She said they've been absolutely horrendous with follow-up, returning phone calls, submitting paperwork, you know name it. She's had endless complaints from patients and she's experienced it herself.
My hospital is opening a new state of the art cancer center in a few months and I may transfer some of my care there after I see what doctors move to the new center. We have several top notch cancer research universities in the LA area, it's just that traffic is so bad here that it could take me 3-5 hours to get there even though it's only 50 miles away. It's not much better heading down to San Diego (I'm right between both cities), last few times I drove to SD it took me 3 hours in the middle of the day. That's too far to travel on a regular basis. But I am hoping that the new facility will attract some fresh top talent.
Ah well, I tell myself it's not my MO's fault that this thing has been so resistant to treatment. It's been resistant to targeted treatment, to chemo, and had only a partial short-lived response to rads. I just wish he would be a little more aggressive with changing treatment sooner before things get out of hand again. I know he's doing it to try to balance my quality of life, but based on the fact that the tumor is still bigger than it was last June, I calculate that if it continues to grow at the same rate I have no more than 90 days before I am completely miserable with pain again. I absolutely love my RO and she's been really on her game with the IBC, so if I don't think my MO is being aggressive enough I'm going to talk to her about referring me to someone for a second opinion. She's on the tumor board and I would trust her judgement.
I'm really worried about Amarantha too.
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Lori, I bet you already have experience with the Pacific Surfliner, but when I lived in Ventura County and had meetings in San Diego I always took the train. Maybe you could arrange a consult with UCLA or USC, or UCSD, and do train/uber to get there. Perhaps a second opinion from a University cancer consultant would spur your MO to a more aggressive approach.
I know it feels like you're racing the clock to get this thing dammed up again.
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And Amarantha, just know we are sending prayer and good vibes across the pond to you.
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That's not a bad idea SB, the Surfliner is a fun ride and it sure beats sitting in this d*mn traffic. The 5 was a parking lot when I was trying to get to my PET scan appointment this morning. I'm so tired of living in this overcrowded state that is getting worse every day, but I'm afraid to leave all of the world-class health resources we have here.
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