IBC lounge: roll call, support and just a good place to hang out
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Sorry about the news of Rob, TT! As Lori says, this disease truly sucks. I hope his rads, and then his chemo, gets it under control. It's weird enough having a port delivering poison to the vessels in your heart...having a direct path to your brain is weirder. But it's well said...at least they can do something.
I ducked the Colorado blizzard by being in Virginia taking care of my 3-month-old granddaughter, Ada. It's beautiful spring here. Daffodils, tulips, hyacinths, dogwood--and we went early to the tidal basin in DC to see the cherry blossoms. The sight was breathtaking. I never knew such shades of pink existed! My hubs said there was a lot of wind there in Colorado but not much accumulation of snow. Our little dogs appreciate that. When it's deep their bellies get chilly.
Lori, I'm glad to hear your rads were gentle to your poor skin, and I hope they continue to work their magic for a long time.
I've had an issue recently that caused a tiny concern--my legs, rather suddenly, became weak, heavy, and tingly. I was initially concerned there be a metastatic lesion on my spine, but then concluded it was a flare-up of long-standing lumbar stenosis. My doctor still wanted an MRI and there's no cancer there, just a spinal canal that's squeezed down and choking off the nerves to my legs. And I'm certain the letrozole aches don't help matters. Anyway, I'm hoping there's a fix besides yet ANOTHER trip to the operating room. I resolved years ago to never, ever see the inside of one again, at least from a supine position.
Good thoughts and vibes to all here. And a blooming hyacinth--I hope you can smell it!
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SB I grew up on the East coast and I really miss all of those spring flowers - hyacinth, tulips, daffodil, my grandparents gardens were also filled with lily of the valley and violets this time of year (they had the most incredible gardens). Dogwood trees were always a favorite, and pear trees. Geez you just reminded me of my childhood! I have never been to see the cherry trees in bloom though, not sure why I never got around to it during the 30+ years I lived in the area. I bet it looks amazing.
Glad your problem wasn't the cancer returning, but it's still serious and I'm sure very scary. I hope you can avoid surgery too. What can they do for you before deciding that surgery is the only option? When you do you see your doctor next? Will be thinking positive thoughts for you.
Now I'm going to have to see if I can find a potted hyacinth or tulips at one of the garden stores around here.
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Lori, try Trader Joe's. I bought a potted hyacinth there a couple of weeks ago and it scented the whole house.
The neurosurgeon is booked up until June. In the meantime I intend to get off my lazy backside and try to strengthen my core. It probably won't help the stenosis issue, since it's a structural thing, not a muscular strength thing, but it can't hurt. Well, it might hurt, but it's a useful pain. What I don't want to do is go and spend $2k on physical therapy for it to do nothing. Our high-deductible medical insurance makes me think twice, or five times, about doing anything but the bare basics when it comes to medical care. I saw my new oncologist in January and paid $500 for the visit and two tumor markers. Yowza.
I learned about the DC cherry trees in grade school and this is the first time I've seen them. Heavenly sight.
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Lori, I’m so glad to learn that your rsdiation treatment worked on your nasty skin mets, and hope the effect will last for a very, verylong time.
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Thank you ADDK, I'm cautiously hopeful but since this was Round 2 for me I'm not going to relax just yet, especially if we can't kick the primary tumor back a little more. Any luck finding a treatment that works on your skin mets? I know that I've been very fortunate in being able to clear them up twice so far. It's going to be years before tucatinib is approved and we really need that drug. I'd like to get in the HER2Climb trial if the mets return, but I don't think I'll meet the criteria since you had to have already tried Kadcyla and not been on capecitabine (Xeloda) in the previous year. Since Herceptin is still working on my distant mets I have no reason to progress to Kadcyla just yet and I'm hoping to go on Xeloda. With my luck I'd land in the placebo arm anyway. I hope that things are going okay for you and that they aren't getting worse.
SB $500 for a visit with your oncologist and a blood test is crazy, no wonder you're careful about your medical care. I have a high deductible plan too, but everything has a co-pay and the deductible never applies. I've never paid one cent toward the deductible. The co-pay for my oncologist is up to $80 this year and my lab work is $8.
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Lori, I hope your skin mets will never return and that you enjoy everyday without them. I´m either in the placebo arm, or tucatinib is not the wonder drug I hoped for. My lastest scan was inconclusive - some areas had shrunk, others had progressed. Nevertheless, two days ago my mets on my back and in my armpit started oozing like crazy, which I guess is not a good sign. My pain is getting worse - both the level and the area involved - either due to progression or the drugs battling the cancer. I hope for the latter. On my pain doctors advice I doubled the gabapentin dose from 300 to 600 mg morning and evening. I became so foggy/drowsy during the day that I chose a higher pain level and went back to 300 mg. in the morning. Sorry that I can´t share any good news ....
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ADDK I am really sorry to hear that. If I remember correctly you need the trial to get access to Xeloda, so even if you are in the placebo arm it gave you access to a drug you wouldn't have otherwise? I hope you're not having progression, especially if that means they might remove you from the trial. There's nothing more frustrating than when some mets are shrinking but others are growing.
I was hoping that this would work well for you and I'm sorry to hear that your skin mets are getting worse. Mine oozed the first time so I know how miserable and frightening it is. I have experienced pain when chemo was killing cancer cells, but I've also had pain associated with skin mets; it's hard to know which might be causing it without a clear sign one way or the other. Mine oozed a lot before they started scabbing over, they said it was likely my body getting rid of the dead cancer cells, so I'll think good thoughts and hope that is what's going on with yours. Sending big hugs and positive thoughts your way.
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Lori, thanks for your kind words. I saw my MO today, and due to visual progression I´m officially out of the HER2Climb trial. I had three cycles. Somehow, in a strange way, I´m kind of relieved because the HFS from Xeloda on top of the pain from my skin mets simply became too much. Today my MO finally realized that they have to think out of the box, and not just ordinate yet another chemo together with Herceptin to which I´m obviously immune. It took them almost two years to come to this realization.They have squeezed me in for a scan tomorrow to see if I have still skin mets only, and afterwards I´ll have another round of Herceptin - just to do something as my MO said. Depending on the scan results, I´ll have yet another chemo due to organ involvement, or they will transfer me to their experimental cancer unit (gene tests, immunotherapy etc.).
I hope that you are doing well and enjoy every minute without the darned skin mets :-)
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Well that really stinks ADDK, I'm so sorry. Let us know how things go.
I should have the results of my genome sequencing any day now, was supposed to have it done months ago but they did an OncotypeDX by mistake instead. My MO tried to dissuade me because he thinks it's still in the very early days, everything is experimental and very few people are finding any meaningful results from an expensive test. I wanted it done anyway so I have the results on file for the future.
Hope your scan goes well and that they find a treatment that works for you with minimal SEs.
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Lori, I have to educate myself regarding genomic testing. Besides BRCA mutations, it is my understanding that my hospital only runs tests for specific mutations according to the trials they are currently doing. From my file I can see that they have used Next-Generation Sequencing for the tests done till now whatever that means. Please share your knowledge with me and exactly what you´re having tested and the results and meaning of your test.
I had my most thorough scan ever today and have an appointment with my MO on the 23rd MO for the results. I guess I´m lucky not to suffer from scanxiety - anxiety will not change whatever they´ll find, only make me feel (more) miserable. Already today the experimental unit of my hospital left a message on my answering machine that they can squeeze me in for tomorrow. With public health care I have learned not to bee too optimistic, so I appreciate the unprecedented speed at which they have worked the past two days.
Hope you continue to do fairly well :-)
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ADDK I'm no expert in it myself, but I believe that the Next Gen Sequencing and genomic sequencing are the same in that they examine the tumor at the molecular level, DNA, to determine what specific genetic mutations there might be (if any). If I understand correctly, NGS is the actual method used to perform the analysis, known as high-throughput sequencing. I start getting confused about the difference between genome sequencing, whole genome sequencing, exome sequencing, RNA sequencing (as opposed to DNA) etc. Precision oncology looks into developing drugs that target those specific mutations (similar to the way HER2+ targeted therapies work), and the tests can also sometimes predict that a tumor may not respond to a specific drug because of a certain mutation.
I wanted my tumor tested by an NCI-MATCH (National Cancer Institute Molecular Analysis for Therapy Choice) approved laboratory, which puts me into the NCI-MATCH Trial database and is a requirement for participation in any NCI-MATCH clinical trial, which is the largest precision medicine trial. Foundation One and Caris are the two most popular labs here in the US, and since they were the first labs approved for the NCI-MATCH program they both have a huge database of biomarkers (hundreds of thousands of tumors sequenced).
The concern is that new biomarkers may be identified in the future that aren't being tested for now, which is why my oncologist thinks it's all still too new to be worth the expense. There hasn't been any significant progress made yet, NCI-Match has only been available since 2015, still in its infancy. But since everything seems to be going in the direction of precision oncology and the doctor took extra samples during my last biopsy specifically for this purpose, when I run out of traditional options maybe I can help somebody in the future by participating in one of the NCI-MATCH trials. Precision oncology seems to be the direction everyone is headed in.
Here's more info about the NCI-Match program - https://www.onclive.com/publications/oncology-live/2019/vol-20-no-3/nci-match-results-offer-clues-for-the-use-of-agents-across-tumor-types
BRCA is a genetic test for hereditary alterations, whereas this is a genomic test for acquired alterations in DNA.
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Lori, thanks for your reply. In my opinion you are an expert, indeed :-) It´s my understanding that by using an NCI-MATCH approved lab you will get access to any trials relevant for the mutations they may find. It´s no less than ingenious if I have understood you correctly.
Do you have any treatment presently to deal with your primary tumor?
I went to see the doctor at the experimental unit of my hospital today. They will now run a complete gene test on my original tumor, including the cells that were benign. When they have the results in a couple of weeks they will cross check with our leading hospital (the place where all the most brainy doctors in Denmark work) whether they run any relevant trials. She told my that since my last visit in January several new trials that may be relevant have been started. So it seems to be an area with a lot of activity.
My hospital has further instructed my municipality (responsible for wound care) about dos and don´ts with my skin mets. So this morning the nurse appeared with a wide range of wound care stuff instead of just a bandage. They have now applied some kind of silver. From your previous posts I know that you very well know what I´m talking about :-)
Though it´s scary to have Herceptin only I look forward to the next couple of weeks with pain from my skin mets only, and no other SEs than a runny nose and totally damaged nails :-)
I hope you´ll enjoy the upcoming holidays and will a lot of good experiences.
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It sounds like you are getting the right attention ADDK, I'm glad to hear that. I had good experience with the silver on my skin mets the first time. My MO didn't believe in it but I chose to listen to my wound care specialist. I'm sure it was due to a combination of the chemo and the silver, but my ulcerated wounds healed completely and I had all new unblemished skin. If nothing else it should prevent infection, which is a big concern once they start oozing.
We should compare mutations when we get our results. You'll be entering trials long ahead of me (if a good match is found) and it will be interesting to follow your journey with the hope that they find something that crosses the blood/skin barrier to work on skin mets. We are both HER2+, and that fits with my research which showed that HER2+ people often have immune-privileged skin that is resistant to Herceptin while the rest of the body does well on it. So frustrating. Now that you've been released from the HER2Climb trial will they tell you which arm you were in? Would really like to know if tucatinib didn't work on your skin mets or if you were in the placebo arm.
I'm just on Herceptin and Perjeta for now too. Have to wait more than a month after completion of radiation to have scans, and they won't discuss further treatment until after we get the scans. I'm anxious to know what's next and frustrated that things can't move faster. Two months can make a big difference for me because once it starts growing, it spreads really fast. Now that we have things going in the right direction I want to keep pushing and kick it back further. I'm sure you feel stuck in limbo like I do. I'm chuckling at your runny nose and damaged nails comment. I have to buy Kleenex by the case and am always reassuring other cancer patients that I'm not sick, it's just Herceptin haha! I get frequent nose bleeds too.
I hope you enjoy the holidays too (and everyone else here on this thread). It snuck up on me and I have no plans other than spending some time with my husband enjoying the beautiful weather. This year has been going by too fast.
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A short update from me.
Last June they've found 4 suspicious tumors in my lungs. Last Christmas, one tumor was stable, one smaller and the rest had disappeared. But the last scan showed that the one tumor got slightly bigger and the other one disappeared. MO doesn't worry yet since it doesn't grow fast.
In an attempt to do something for me, she has asked the opinion of the surgeon and the radiotherapist. The surgeon is willing to operate and take it out. The radiotherapist proposes a high dose of radiation again.
I don't know what to do yet, I'll make appt to talk with both of them. In the meantime, I go to Spain for a short vacation, I'm sick of being sick.
Happy Easter!
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MoreShoes that's a tough decision to make - whether to go after it aggressively now or wait until the symptoms cause problems. If that's your only met and they think they can get rid of it completely, I understand why you might want to do something and have a chance at being NED. My MO prefers to wait until my mets cause a problem (for quality of life reasons) and I'm not always comfortable with that even though I understand his reasoning. I have little chance of ever being NED. Wishing you good thoughts as you make your decision.
Sick of being sick about sums it up. Enjoy your visit to Spain, I hope it's peaceful and relaxing. Happy Easter!
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MoreShoes, my pal Rob has had some similar treatment to you and is going to chime in here with some advice.
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MoreShoes, I cannot see from your signature if it´s relevant, but I read an article somewhere (a link on these boards?) that surgery improves survival in case of only one metastasis site. I think one important think to consider would be the extend of the surgery and the healing process. I´m green with envy that you´re going to Spain (in a good way), and hope you will enjoy every minute.
Lori, I do understand your urge to push things because of your §¤%# fast spreading skin mets x 2. However, Herceptin and Perjeta seem to keep you otherwise stable. That´s something.
According to my MO the only two reasons for revealing in which HER2Climb arm I am (was), would be an emergency requiring info an all meds that I take, or revealing it after the end of the trial in case the combo had worked.
Due to my "body phobia" I don´t discuss scan results with my MO, but the fact is that that several months ago my mets spread to my muscles underneath my skin mets (shoulder, chest and abdominal muscles). The pain form my muscle mets are accelerating, but during the holidays I´ve found a cocktail of the pain meds at hand that works. I´m so dizzy that I should not leave my house, though :-)
Btw, if you decide to wash your Kleenex (i.e. forget to empty your pockets), wash Kleenex Soft only - never regular Kleenex. They make a real mess that requires vacuuming the clothes after they have dried.
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A single met (or only a few small ones in a single organ) is called oligometastatic and they will often treat with the intent to cure. If not oligo, surgery would usually only be done for palliative reasons since like you said, it won't improve overall survival.
Sorry about the pain ADDK, but I'm glad you found a cocktail that works. It's tough to find the right combination that doesn't turn you into a zombie, but even if you're too dizzy to leave the house I'm glad you're getting some relief from the pain.
Haha, even Kleenex Ultra Soft makes a mess of my clothes! As hard as I try to remember to check all of my pockets before doing laundry, I still manage to leave one every time.
Herceptin and Perjeta do seem to be keeping my liver and bones in good shape, but the mets in my chest wall muscles, the primary tumor at my brachial nerves,and now my distant nodes all are resistant so far (plus my skin). The tumor at my brachial nerves is concerning because it caused me to lose use of that arm before and my MO is worried about it happening again, but the distant nodes actually worry me more right now since that's how it spreads through the body to other organs and they just popped up on my last scan. I hope I don't get any surprises at my next PET/CT scan.
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Lori, thank you very much for your reply. You've given me a different perspective. Here it's the only place I can discuss these things and not have to explain myself.
ADDK, thank you. I'll check about surgery and metastasis. I'm dealing with cancer for more than 10 years and the NED periods are unfortunately getting shorter.
But, it's 22 of April 2019 and I'm still around. I'm very grateful for this forum.
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Lori, MoreShoes, ADDK, Amarantha...I wish so much there was more that I could do for you. I'm glad you have each other, along with others here, who can come alongside you in your IBC experience.
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Lori, MoreShoes, ADDK, and Amarantha, you are not only helping each other, but many people read this thread and your experiences are building a body of knowledge that remains as a record for very many others.
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Yes Lori, MoreShoes, ADDK, TT, I'm really glad you are all here. (More Shoes ! so glad to see you again !)
I'm waiting impatiently for my PET scan - only two days left to wait. I have strange masses in abdomen and huge bloating, plus now tons of pressure all around rib cage. So I want some attention, and I want them to cut me open and take everything out. LOL.
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Sounds like ascites amarantha? If so, they should be able to drain them. I hope you get some relief soon, that must be miserable.
I appreciate all of you and am very grateful for the support. I feel bad that so much of the conversation has been about Stage IV issues lately. I know we have a special forum for Stage IV, but IBC is so different and I feel like only those of you here can really understand a lot of it. There is no Stage IV IBC thread, the closest fit is Skin Mets, and even that doesn't have much participation. The Lounge here feels like home with all my friends.
But feel free to tell me to take it elsewhere any time it gets too depressing haha!0 -
Lori, by staying here, all you Stage IV folks are building a unique IBC resource that is invaluable. And I know we are a close group that draws strength from each other, whatever our stages.
Amarantha, your PET scan will likely show what's what with your stomach. Good luck.
ADDK, welcome, it's nice to have you here sharing your experiences.
MoreShoes, you are a medical inspiration. Nice to have you back.
Sbelizabeth, thanks for coming back regularly to spread your good cheer.
To all others posting and lurking, best wishes.
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Hi everybody - you amazing crowd. Reading the latest posts I feel like a thief in the night. My original diagnosis was not IBC, but my recurrence is inflammatory mets. Am I in or out of this thread? :-)
Amarantha, thinking of you and your upcoming scan, fingers crossed.
Lori, there are a lot of things regarding treatment that I simply don´t get. Is your MO waiting for the results of your radiation treatment to "settle" before he decides what to do with the mets that concern you, or does he want to see if H+P keep your mets stable?
My MO has finally come to the conclusion that throwing yet another chemo drug at me is useless - none of the chemo treatments I have had till now had any effect on my skin mets. Btw. I asked if I could ever learn in which arm I was in the HER2Climb trial. The answer is no, but once the drug tested (tucatinib) has been approved my participation at the trial does not exclude my from having it.
We must find new ways to beat this crap.
On another thread I read about the clinical trial DS8201A - I haven´t had time to look more into it yet.
My hospital has not yet done the "large" gene test, but from the limited tests they made in January they found benign mutations on my BRCA1 and BRCA2 genes, and from my electronic journal I can see that the doctor has made a note about checking whether the trial B9991032 would be an option for me. It´s a phase II trial involving the drugs avelumab and talazoparib. I have very little knowledge of gene testing but find it strange that benign mutations are apparently relevant ...
My scan last week showed skin mets progression (surprise!) and spread to a lymph node near my collar none. The latter explains the dent on my left lower arm (lymphedema in progress). I had convinced myself it would be a well developed muscle - ha! ha! Today I start doubling my gabapentin and tripling my opioids doses. It sure will make me even more foggy/drowsy, but I´m done with pain! I`ve just swallowed my evening snack (it´s 10 p.m. in DK), so I better get myself to bed before the effect of the new doses kick in :-)
Good wishes to all of you!
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LoriCA I'm thinking Ascites too, and worried about mets in abdomen (wall ? peritoneum ? etc) and also worried that my lung mets are causing my rib pain. Here I am at 4 in the morning, not sleeping because of pain: the war on pain has begun I guess. The sharpest is skin burning/searing, and then lower and upper back pain, plus crazy pressure around upper chest and of course the abdomen. I'm unsure how much tramadol I've already taken; I took some Aleve, now what ... Okay sorry to blather at 4 am it seemed like the most reasonable thing to do, hah !!!
I'm just really glad you guys are here hanging out on this thread, its amazing what a relief it is just to be able to come here, it feels like we're all in some sort of lounge together. I wish you all the best.
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Social media, such as Facebook and community forums like BCO, are important discussion platforms for Us during and after treatment. They also, I believe, help to make us resilient, and that's what we need to be most of all. I wrote a short article on this topic which has had a good run on Twitter. Here is is from my websit
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Good morning all! Stepping into the lounge for some craic, as they say in Ireland--news, gossip, conversation. I so enjoy being part of the group and sharing experiences and support, no matter what stage we all are.
ADDK, I discovered my cancer when I noticed a pink area on my breast, about 3-4 inches in diameter, with peau d'orange texture. There was discussion among my team as to whether to call it IBC or not. I think they decided against it only because they knew the label would freak me out even further than I already was! So the diagnosis was IDC with dermal lymphatic emboli. So yes, absolutely--if I'm here, you're here.
And yes, we do need to find new ways to beat this crap. I hope the bigger doses of gabapentin and opioids squash the pain.Amarantha, if it's ascites and pleural effusion that are causing you such distress, both can be managed to improve your comfort. I would think it's time to figure out a pain management strategy. Tramadol, tylenol, naproxen, all have their usefulness, but when they're not cutting it there are other approaches. You need to be comfortable and be able to rest. Sending good vibes (and prayer, because that's how I roll) that the scan has good news for you.
MoreShoes, enjoy Spain! Ole! (is that what's said there?)
Traveltext, I can't tell you what your input has meant to my "awareness" of male breast cancer, and how it has expanded my compassion toward men with this disease. Thanks for hanging with the girls here! I know there must be times when you're weary of being the banner carrier for your disease, but we're grateful for your support and perspective.
It's spring here in Colorado, and unlike when I lived in California, we have suffered enough to deserve it. It's truly beautiful. Pike's Peak is still crowned with snow but everywhere else is greening up and thinking about blooming. Have a lovely day, everyone. SB
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ADDK we need a baseline scan before I start a new treatment so they can measure anything that's left, and then be able to accurately track the progress (or lack of) of any new treatment I would start. Radiation causes inflammation which can make the MRI less accurate, so I need to wait several weeks before they are confident that the MRI would be accurate. And radiation continues to work for weeks after treatment ends, so the tumor was expected to continue shrinking. Then it takes a few more weeks for the radiation to leave the body, and radiation will show as a "hot spot" on the PET scan similar to a cancerous hot spot, so I have to wait even longer for an accurate PET scan. Once we get all of that and see what is left, where it is, and how much, then we'll decide what's next for me. Since I have mets in multiple places we need to see how everything is doing before we decide how aggressively we'll treat it.
Amarantha I'm sorry you're in so much pain. Are you working with a pain specialist or palliative care team? You can blather any time you want, that's what we are here for! We need people who understand.
Speaking of TT's affect on creating awareness of male BC - I recently read an article about the use of gender inclusive pronouns and when it's acceptable to use gender specific pronouns. Their example was using "he/him" for an article about prostate cancer and "she/her" for one about breast cancer. I felt obligated to politely point out that men have breasts too and also get breast cancer, and that maybe a better example would be ovarian cancer since only women have ovaries. I mentioned that I had a friend with male BC who was working to create awareness and eliminate the stigma. Both the author and the editor sent me quick responses, immediately changed the article, and the editor followed up to thank me and let me know that it had been changed. Fifteen male 9/11 first responders have been diagnosed with breast cancer, you'd think that would help with awareness.
SB glad that you are enjoying spring in Colorado. It was a cold and wet winter here this year, and looks like we're going straight into summer temperatures with no real spring (such as it is here in southern California haha).
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I wasn't due for my yearly ultrasound until July but a scheduler mistakenly set the appointment for this afternoon. Might have been a good thing getting it early because they found a very small chest wall nodule on the non-cancer side that wasn't there last year. Talking to the radiologist who said it was most likely fat necrosis, my choices were to wait for six months for another ultrasound or a biopsy or a CT scan. I said I'd do whatever she and my radiation oncologist thought was best. A couple hours later I found myself scheduled for a CT scan on Monday and biopsy on Wednesday. They sure do move fast with IBC.
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