IBC lounge: roll call, support and just a good place to hang out
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TT she has been absolutely wonderful and I can't tell you how reassuring it has been to have a doctor who actually understands what is going on with my skin and pays attention to it, like when she immediately recognized it was still spreading the first week after my first CT scan and enlarged the area that was to be radiated. She recognized it before I did, which is really something. I like her so much that I wish she was my MO and not just my RO.
MoreShoes, yes the gym!! I've put on 15 pounds since last fall when everything started going really downhill, and I'm only 5'4" (I've lost 1.5" from spinal compression due to bone mets). I really need to drop that extra weight to feel better about myself. I've always been active and really believe that trying to stay in good shape helps me fight the symptoms of the disease and the side effects of treatments. The pain in my axilla and arm had made even every day movement painful, even the friction of the natural arm swing when walking was painful. I have a small gym in my house for strength training, try to walk/hike as much as possible, and last summer added Qigong for flexibility and mindfulness. It's easy enough for me to pop upstairs and spend even 10 minutes strength training and work my way up, no hassle of having to get dressed and driving somewhere else, no excuses. The endorphins from a good workout are key to maintaining my mental health too!
Looks like I may be the only HER2+ one here right now, but I'm going to drop this info for anyone who might be lurking since IBC can metastasize to the skin very quickly. I've been doing research to try to understand why targeted drugs worked so well on the rest of my body but not my skin, and I came to realize that there are several of us (HER2+) on the Stage IV forum who experienced the same thing, both IBC and non-IBC. I found several research papers that say there's strong indication that the skin is "immune privileged" especially in HER2+ people, and that when the targeted drugs go about killing cancer cells, the cancer goes to the skin where the drugs can't touch it (one papr called the skin a "sanctuary" for the cancer cells). The incidence of cutaneous mets seems to be overwhelmingly higher in HER2+, and there is currently no standard treatment for it. Tucatinib is the first drug to show promise in fighting the mets in the skin (also crosses blood/brain barrier, which is where most of the trial focus is), but it's still in several Phase I trials. HER2Climb, which is a triplet with capecitabine and trastuzumab, is in Phase II. It's one to keep an eye on for anyone who is HER2+.
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Wonderful news Lori, it gives a sense of hope :-)
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Hi folks, I just saw my oncologist. We are changing to Xeloda. New adventure.
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Amarantha, we are all hopeful that Xeloda will be the magic bullet for you. My oncologist said Xeloda was particularly effective for skin involvement, which is why they incorporated it into my rads treatments. It was very do-able. I got some blisters on my toes that I attributed to Xeloda but not extensive or painful.
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Oh, thanks for this sbelizabeth, that gives me hope !
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I hope the Xeloda works well for you Amarantha. I am hoping that my MO will agree to add it to my H&P once I finish rads. From what I've been reading it seems very doable as long as you stay on top of any hand/foot problems.
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Thanks LoriCA. Well that sounds like quite a cocktail with the H and P and the rads. I am thinking you and I should start a new forum on here for an experimental radical new therapy called "...and the Kitchen Sink".
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+ the kitchen sink is a great description for the multitude of treatments you to have been through....
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It does feel like we're throwing the kitchen sink at it sometimes, but I haven't done a fraction of the chemo drugs you've been on Amarantha. I like your idea of a new forum because even at Stage IV there's a difference between those who are oligometastatic or bone only and those of us who are fighting a constant battle. I often get a bit jealous of Stage IV people who can do just hormonals for many years and be stable or even NED (except when they get a terrible SE like TT) and they call MBC a "chronic" disease when I've been on IV drugs since Day One and have yet to even be declared stable. I'm sure you can relate.
The good thing about H&P is that most of my mets are still responding to it and we can continue to add a chemo as needed and use just the H&P for maintenance in between, until we decide it's time to move on to Kadcyla (which is Herceptin plus a chemo drug). I think that the longer I can hold off on moving to Kadcyla the better, because I still have a few chemos to try and pretty sure they can't be added with Kadcyla so it would limit my options. Adding Xeloda seems like a good choice to me because it's more of a long-term maintenance chemo.
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So ... my last treatment was the 28th of February, and I must wait until the 1st of April to take my first Xeloda pills. You'd think I'd be starting to rally, energywise, but no, I still feel like a slug and a flounder, a professional sleeper and lazy person. What talents.
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Amarantha, do you have any energy in the day? If not get your thyroid checked and get some meds. Then you can become an amateur sleeper. If you ever feel like it, tell us about some of your favourite opera moments
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Sorry you're dealing with that Amarantha. The extreme fatigue from these treatments is no joke. I've always been a high energy person so mentally it's one of the toughest side effects for me to deal with. I can relate to your feeling of being lazy. My MO told me to start pushing myself out of it now, or it could take me a year to recover from just the radiation related fatigue. That's easy for him to say, I was already dealing with fatigue from Herceptin before we added radiation. My husband says it's my body's way of saying it needs rest so it can heal. He wants me to rest more, my doctor wants me to exercise more haha!
I think it's the cumulative effect of one treatment after another after another. Your body has been through a lot since you started down this path, and it's only been a few weeks since your last chemo. Go easy on yourself. I hope you start feeling better soon.
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Thank you for being understanding, Traveltext and LoriCa, and you are right ! I do think it is a cumulative effect. And for fatigue, we do get conflicting reactions. My doctors say "don't fight it" and just rest, but they also say to get gentle exercise. Arrgh. I tried to shake myself, worked a little in the garden, but gave up fighting fatigue at about 3 pm (well I had taken a tramadol in the night so it made me even sleepier than usual) and I slept until my husband lovingly woke me at 5 pm for tea and toast, and I felt awake enough to at least sit up and eat, and do the dishes, then work on some translations of his poetry.
The pain killers add to the problem of course. I can either be awake with pain, or a zombie with no pain. I have knife-like pain in my side - the doctor said it is "adhesions" - I'm supposing it might be nerves coming to life as well. IN any case, I feel like I'm being stabbed with long needles over and over. They've given me different things for the pain, but they all make me feel like a total zombie and also slow my digestion to a standstill. I've gained so much weight and fat around my middle, I can't even recognise myself. I'm like wearing a tire !
I had wanted to drive out to the country an hour away, and visit my friends mother who is dying. She's 90 and has had a stroke, and is slowly fading away, refusing to eat. Even before her stroke, she would tell anyone who was willing to listen that she had only one wish, to die, she was tired of living, she missed her (long gone) husband, and wanted to join him. Now she can no longer express herself, but I am quite sure she wants to go. I wanted to get out to see her one last time, she was like a second mother to me for so many decades, my wonderful French mother ... but knew it would be crazy to drive. If she can wait until Friday, I hope to make it out there to see her one last time.
Okay enough yarping. Tomorrow is another day ! said Scarlet.
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Yes I agree with the others. Your body has been through so much. It's cumulative.
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Oh Amarantha sweetie, I've been in that place before and I know how dark it is. I wish there was something we could do to help you feel better. Please make sure to take Senokot or Mirolax with those pain meds so you don't end up with bigger problems (been there too). I do hope you feel up to visiting your friend Friday. Sending you lots of love, light and healing thoughts.
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Oh LoriCa, thank you so much for the kind words, they brought tears to my eyes. I did manage to get out to see my friend's mother Friday, just in time to watch her agonise in terrible struggle to breath, and to be there when she actually died, with all her family around her. We were all very sad and moved, even though it was best for her to no longer be suffering. Now I think it has added to my fatigue because I really feel like I have been run over by two busses and eight elephants. But tomorrow I am off to Bordeaux to see an opera, it does not require much energy to sit on a train, and do this, and it will maybe change my ideas.
Hugs to all.
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Amarantha, I'm amazed at your resilience. It took a lot of compassion to be at your friend's mother's bedside as she died. I can understand how you feel knackered!
I hope the Bordeaux opera was refreshing for you, and you feel a new infilling of joy. We are all in your pocket. SB
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Amarantha I'm sure it meant a lot to her and the family that you were there. I hope you enjoyed the opera and that it brought you some peace and happiness.
I attended a Komen Metastatic Breast Cancer Conference last weekend with friends from my support group. They have been promising to pay more attention to the metastatic community and devote more research dollars, so I wanted to see what they had to say.You can imagine how upset it made me when I was in a break out session led by an "expert" doctor and when a woman asked what causes Inflammatory Breast Cancer, the man paused and stumbled for a few minutes, hemmed and hawed before poorly trying to explain how some (non-IBC) breast cancers can cause inflammation - in other words it was obvious that he had no clue about IBC, that it starts in the lymphatic system and is a completely different animal.I get that most MOs have no experience with IBC because it's rare, but when a lecturing expert with 40 years of experience doesn't know the first thing about it...my brain was too tired to figure out a polite way to challenge him in front of a room full of people so I just left a comment on the feedback form.
Not as bad, but earlier in the day we sat through a presentation on understanding the different breast cancer types, complete with anatomical drawings, the difference between ductal and lobular and how they form. No mention of IBC. At least she didn't give incorrect information, but it did make me feel left out.
It's discouraging that information about IBC isn't included even at a breast cancer conference attended by the medical community. I don't know about you guys, but I never heard of it until it happened to me. The lack of awareness in the medical community has been a big frustration.
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Ack, LoriCA, no mention of IBC ! that's just so frustrating. I do think it is something they still just don't understand. Even less understood is the metastatic version of IBC. They just lump it in with all the rest, but it doesn't seem to behave in the same way at all, and they keep being surprised.
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Lori, are you okay if I post your Komen rant, anonymously, on the IBC Facebook page? It's really not good enough for them to be so ill-informed.
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Absolutely TT, but I do want to be clear my rant isn't really about Komen but the presenters from the medical community, mainly the one who obviously didn't know the first thing about IBC despite 40 years in Hematology/Oncology (the other speaker I mentioned did an outstanding presentation, one of my favorites, she just didn't include IBC). It's one thing to share no information, quite another for an "expert" to give incorrect information. I guess I can't be very upset that IBC wasn't mentioned at all during the conference since I do realize that we're a very small minority (4%), but in a way, I still am. And I have seen posts on the metastatic forum from women whose recurrence was diagnosed as IBC even though their first diagnosis wasn't, so maybe we should be pushing for more information about it at these types of events.
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Fair enough, but it was a Komen event. IBC is a minority diagnosis but one which needs more attention. Here I am banging on on about male bc which is just one percent of new cases!!
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Right after my diagnosis I was very outspoken in warning people about IBC since hardly anyone has heard of it. Truthfully, I got burned out after seeing how many women post on this forum freaking out convinced that they have IBC when they don't have any of the typical symptoms. That's the hard part about diagnosing IBC, so many of the symptoms could be due to something completely benign.
I saw a post on Twitter this morning from whatever big conference is going on right now that described different kinds of BC, of course ductal and lobular but also mentioned medullary, tubular, mucinous, etc....and it didn't mention IBC either. Seems we're just the forgotten ones.
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When I' first discovered the peau d'orange area on my breast I went to my gyno and asked if it could be inflammatory breast cancer. She said, "what's inflammatory breast cancer?" Thank goodness she trusted ME, and insisted I have a diagnostic mammo and U/S.
It's hard, isn't it? The symptoms of swelling, rash, skin changes, heat...are so common for other skin conditions that just happen to be on the breast, and I, too, am wearied by repeated posts by people having meltdowns about bug bites or ringworm. On the other hand, there are people who were fobbed off by the medical community for months who DID have IBC and no one would take them seriously.
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I'm so glad she trusted you SB and that no time was wasted. I don't think that happens very often.
Even after already being diagnosed with IBC and being with the same MO this entire time, when I suspected it was acting up again last year my MO thought I was over reacting because it didn't "look" like cancer to him. I told him it didn't "look" like cancer the first time either but it was! And sure enough it was this time too. It's so frustrating.
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Checking in with an update because it's been too quiet in here. I had appointments with both my MO and my RO this week.
My skin looks fantastic, it's mostly a light tan with a few light pink areas, white splotches wherever the cancer was about to break through. You'd never know I just finished radiation, let alone such a high dose! The tumor at my brachial nerves - it's smaller than it was in January, but still about the size it was in October. We're hoping to see a bit more shrinkage over the next few weeks. My RO scheduled me for an MRI in a couple weeks, and a PET/CT a few weeks after that. PET is very sensitive and the radiation that's still in my body would look like a hot spot so we need more time for it to dissipate, but because the tumor is located at the intersection of my armpit it may not completely show on the breast MRI.
My MO agreed to baseline images but doesn't want to do anything unless/until it starts growing again, at which time I would have to wait to get new scans to document the size increase etc etc. My RO is in line with my thinking and says if there is any evidence of the tumor remaining now (which there will be) we should treat it because every time it starts growing it takes off like lightning. She's going to stay involved in my treatment over the next several months (next official follow-up is in 3 months but I can see her at any time if I have any concerns), and if I need to I'll work with her for a referral to a different MO. I want to take a more proactive approach instead of reactive so I can avoid going through this again (the pain). I really hope my skin doesn't start acting up again because I think it will be hard to distinguish from radiation damage until it gets problematic. Last time it was only two months after I finished the first round of chemo that I first noticed the symptoms again.
Hope everyone is doing well and that my US friends are enjoying the signs of spring, although I suspect that SB may still be getting snow based on what I'm seeing from other Colorado friends.
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Quiet can be good here Lori, but it's always good to know what's happening with those in active treatment.
So glad that your skin is in good shape. The scan results will be interesting. Your RO sounds right on the ball, this must be a huge relief. I wonder if a plain old ultrasound mightn't be as useful as other scans. Certainly it's not such a dramatic event as a PET or MRI scan. Can they not do a punch biopsy to determine if the skin is tumorous or just plain red from the rads?
All good with me, but sorry to hear from my male bc buddy Rob, that his mets have popped up in his spinal column and is having radiation starting tomorrow and then maybe chemo through port in head for injection into brain. This is one crappy disease!
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We discussed a few different options, with PET being the best for our overall purposes and the MRI allowing us to get results sooner (the PET will also show if my mets started acting up while I was off H&P for those few months or if they stopped responding). I don't think ultrasound would allow the precise measurement needed, I do know that an MRI (with contrast) and PET/CT (also with contrast) are both considered more accurate when it comes to tumor size. Since my cancer grows so fast we want to catch as soon as possible so being able to accurately measure the size is very important.
I suppose we could do a punch biopsy if my skin starts acting up again. I'm really hoping to avoid any more biopsies for a while haha! I've had three punch and five ultrasound-guided in 18 months. She talked about getting a new biopsy now - I said it's the same tumor that we just biopsied a few months ago, why would I need to get a new biopsy??? I could understand if it went away and came back, but not because it only partially shrunk.
I'm so sorry about your friend. Sounds like it's actually in his spinal fluid, not the bones? Intrathecal chemo scares me. I can't even imagine having a port implanted in my head (an Ommaya reservoir?) . The blood/brain barrier is such a tough one to deal with because there are so few drugs that can cross from the bloodstream to the brain and CSF. That's why I'm optimistic about the HER2Climb study - HER2+ people have a 50% chance of developing brain mets and it looks like tucatinib can cross the barrier (and blood/skin barrier too).
This disease really does suck. I really hope that radiation alone does the trick for him.
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From Rob
Radiation on lumbar started today and finish mid next week. MRI again today for expanded lumbar area, results in afew days. Visit to Neuro tomorrow to start planning for surgery to insert Ommaya reservoir in head for chemo Methatrexate into spinal cord. Just trying to stabilise and can't start chemo until end of radiation.
Spirits are good and at least they can do something 😊🤞
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I'm really sorry to hear that, will keep him in my thoughts.
Not sure I'd have the guts to go through with that.
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