IBC lounge: roll call, support and just a good place to hang out
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TT I am very sorry to hear about your friend. This breaks my heart and I wish we can have complete cure soon for all stages.
Blue 22 I do almost every day and have now two more cycles off taxol before surger
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Hi blue22, I read more than I post. I'm NED for two years now. TT- I love what you write about Pinktober. And I know male bc is not common just as IBC isn't, and we need to bring more awareness. My thoughts and prayers to those of you fighting. I know that sounds cliche, but I really do think of you and pray for you
. I'm in the Chicago area, if anyone ever needed help with anything.0 -
Thanks everyone.
TT I do tend to look at peoples signatures to get a sense of timing. How long did you have to wait between surgery and Radiation? I am still waiting and it is driving me insane. I keep following up with the Drs. office
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Flora thank you for your prayers.
As someone who is metastatic, I often feel guilty posting in this thread as I know that I'm an early stager's worst nightmare. But a lot of what I've gone through can only be truly understood by people with IBC, so this thread has been my primary support and I'm very grateful for everyone here. Many of my concerns don't fit neatly into any of the Stage IV threads, and I often feel a bit lost. I hate IBC because it is a stubborn, sneaky b*st*rd.
TT I'm going to distribute your Pinktober rant at my chemo clinic and at the hospital's Women's Wellness Center where I attend my metastatic BC support group. You made me realize what a terrible experience it must be for a man to be sent to the Women's Wellness Center for a breast MRI or mammogram. Don't know if you are aware that 21 or 23(?) of the male 9/11 first responders have been diagnosed with breast cancer. There could be a way to leverage that group to gain more traction
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Hi Blue22 and all, I'm a regular lurker on this thread and an occasional contributor on this and others. Like LoriCA, I often feel I don't fit in anywhere but I do learn a lot from following along and hope I can help others fro my time to time.
I'm IBC stage IV - diagnosed de novo though I have a history of of previous diagnosis of DCIS stage II from 15 years prior. I had skin mets, bone and liver mets upon diagnosis. I've had two cycles of Taxol/Abraxane that have twice gotten me to NEAD. I've failed on Herceptin & Perjeta alone though only my bone mets flared up again. I was then on to Kadcyla which kept me in stable until muscle mets was found. I had SBRT and continued on Kadcyla until a second muscle lesion. Now, I'm NEAD again thanks to a combo of Keytruda and Herceptin. It's early days still on this combo but I feel good so I'm hopeful it will be a durable NEAD.
Thanks for the good thoughts, prayers and wishes!
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Margarita it is great to see you! Our stories have a lot in common (although I still haven't even been able to get stable), I wonder if it's common that IBC fails on Herceptin/Perjeta alone? You are the only other HER2+ with IBC that I know of, and I find it interesting that neither of us could maintain on H&P alone. It's frustrating when you see so many other people get many years on H&P.
You are the first person I've seen doing Keytruda, are you in the trial? What biomarkers were required for Keytruda? I think it requires MSI- high and I am only MSI-Stable. I'm glad to hear that it's keeping you NEAD and I hope that you get many years on it!
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Starting Kadcyla on Wednesday. Keep your fingers crossed for me that this one will at least get me stable (and hopefully shrink at least a few of these nodes).
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Lori praying for you
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Yes, Lori, it does seem we have much in common. I too had hoped HP would be more effective for longer and was quite disheartened when it wasn't. It's an interesting thought about whether Her2+ IBC maybe doesn't respond to HP alone as well as non-inflammatory HER2+ BC. I guess as a sample of two, we're a bit small to draw a conclusion from but perhaps something for oncologists to consider and research. On the other hand, I did pretty well on Kadcyla and I hope you will too! All told, I was on it for almost three years with minimal side effects and only minor progressions that we twice treated with SBRT before finally giving in and changing the systemic.
Regarding Keytruda, it was a bit of a crap shoot - like all treatments I guess - but I'm not in a trial and I admit that I don't know what MSI means... (?) The primary basis for trying it was, as I understand it, because I have a high tumor mutational burden coupled with a relatively low overall tumor burden. It's been several months on immunotherapy so far and I've been fortunate that I haven't (yet) had any adverse reactions. (the potential side effects can be quite scary so knocking on wood now!) And, it seems to be working though I've only had one scan since starting but hey, I'll take it!
My fingers (and toes!) are crossed for you that the Kadcyla will do it's job. And, if you'd like to connect privately to further discuss our commonalities and options, feel free to PM me. I've followed your progress with great interest too and I've learned a lot from the knowledge and experience that you've shared.
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Flora thank you
I hope your treatment is going well. Margarita sorry for using shorthand, I often take it for granted that everyone is using the same abbreviations around here. MSI is microsatellite instability. My Tumor Mutational Burden is high, but my microsatellite instability is Stable, and everything I had read about Keytruda was that the trials were requiring a High MSI. I'll have to keep an eye on Keytruda for down the line. I did have genome sequencing done but had very few actionable biomarkers, although I had 11 VUS (variants of unknown significance), All of the recommended treatments and trials in my report were for HER2+ (ERBB2).If HER2 targeted treatments don't work at all for me I hate to have to work my way through all of them before going in a different direction, so I'm trying to keep watch for any trial that might be appropriate for me. Many (most?) of the recent trials are highly specific about what biomarkers you need to have. Of my other 3 identified biomarkers, there are no current treatments or trials for 2 of them, and the other only occurs in 1% of breast cancer patients, so I'm not holding my breath.
Side effects for a lot of the new drugs are very scary, some of the ones getting fast-tracked approvals have unacceptable rates of Grade 3 and higher Adverse Events. I honestly don't know what they are thinking, other than getting a new drug to market so they can make money. I'm glad that Keytruda appears to be working for you with minimal side effects. I hope that continues and you get a long time on it. It just plain sucks that the question we have to ask ourselves is if the side effects are worth any possible benefit we might see, and it's never an easy decision. I'm really glad that so far you are finding the drug tolerable.
Thanks for offering for me to contact you privately, and you are always welcome to do the same. I'll probably be in touch after my first infusion if I have any questions. I was going to post on the Kadcyla thread in the Stage IV forum, but noticed that most of the people posting there are early stagers and several who haven't even done the drug?! I'm a bit concerned about neuropathy and wondering if I should ice during the infusion to prevent mine from getting worse like I did the last time I did taxol. I just had to increase my gabapentin again (I'd swear H&P causes neuropathy even though it's not a listed side effect), and having my neuropathy get so bad that it affects my mobility is of concern.
Happy October everyone! It is a beautiful, cool fall day here that I am enjoying immensely because it's supposed to heat up again tomorrow. October has always been my favorite month of the year, and later this month I will celebrate my 21st wedding anniversary.
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Lori, Happy anniversary to you and your husband.
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Lori Hoppy Anniversary and my Anniversary is also this month 31 October. We celebrate it on the 30 as we are a big fan of Halloween.
Lori I pray that this treatment works well for you. I am almost done with chemo and have the last one on the 18 October can’t wait. They will do a MRI tomorrow to check how the chemo treatment is going. I see my surgeon on the 25th.
Thank you so much for your continuous support.
Regards
Flora
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Happy Anniversary Lori!
Flora - Congratulations on almost finishing chemo! I keep being told that is the hardest part. Good luck with surgery.
Lori - My tumor changed form Her2- to Her2 positive after chemo. It seemed to surprise all the doctors, but now Herceptin/Perjecta will be thrown in the mix.
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Radiation was really hard on me. Everyone told me chemo was the worst, and yes, maybe it was. But surgery was difficult. And I am now dealing with lymphedema. But radiation was harder than I expected. My mom had radiation for stage 1 bc and silly me thought it would be similar. Again, another reason IBC is not the same as BC.
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Flora did your wedding party and your guests dress in costume for your wedding? I bet that a wedding on Halloween would be a lot of fun! Glad to hear that you are almost finished with chemo, I'm sure that's a big relief! What's next for you?
Blue that's not unheard of, and being HER2+ opens so many new drugs for you! I'm guessing they will put you on a year of Herceptin and Perjeta now, or are they going to wait until you finish rads? If they give you the option I'd encourage you to do it even though it means an infusion every 3 weeks. The load dose can be pretty rough, but my body quickly adjusted to H&P and I think it's probably the best treatment regimen you could have as far as quality of life. It's not completely without side effects, but usually they are mild enough that they can be easily managed once you get used to it (I buy Kleenex by the case because Herceptin makes your nose drip constantly!). Let me know if you have any questions!
Thank you Michelle!
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Thank you Lori. Unfortunately we just got married in Indian traditional way as we are basically from India. I would have loved to have a wedding that way. I have my MRI tomorrow to see the response to chemo and see my surgeon in October 25. My last chemo is on 18 October
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Thank you Blue22
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Flora that's even better, I think the traditional Indian wedding is so beautiful. Many people in the US do theme weddings and sometimes they can be pretty crazy (what other country has drive-through wedding chapels where you can be married by Elvis?) , but I'm more of a traditionalist myself. Hope you have good results with your MRI.
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Lori thank you😀Waiting for the results now. Though my tumour is reduced but I can still feel the mass a bit and the doctors cannot hand measure it but keep saying it has reduced. Hope the results are okay. I had so much pain in my sternum after lying down from MRI as I have a history of costeochondritis made it crazy that day but went off.
Hope you are doing well and I always have you in my thoughts and prayers and wish the new treatment works well for you.
Regards
Flora
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Flora I think a breast MRI is the most uncomfortable thing ever, it was definitely designed by a man. I can hardly breathe when I'm lying on that stupid table because of the pressure. There are a couple threads in the early stage section with people talking about how traumatic and painful it is. You'd think by now we'd have the knowledge to invent diagnostics that don't feel like torture.
TDM1 hit me pretty hard once the pre-meds wore off and I slept for two days straight. I think I'm starting to feel better now, at least I didn't wake up with that excruciating migraine-type headache. There are a bunch of nodes in my neck that are swollen and very painful, so I hope that's a sign that this chemo is working.
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LoriCA, I was just thinking about you and wondering if you’d had your infusion. Sorry that it hit you hard... hopefully, that will be a one-time thing. I’m not sure whether there is a “loading dose” of tdm1 but each drug change is certainly a shock to the system at first. I was only given compazine as a premed but I eventually stopped it because I determined that it was making me feel worse once I came down from it - and taking it made me super grouchy! I also found that hydration before, during and after infusion helped.
It’s interesting what you said about MSI (and thanks for explaining it) - I have no idea what mine is or whether it’s even been tested. Is that something that is routinely done as part of a biopsy or genomic testing? The genomic testing I had found a PIK3CA marker and a bunch of others of unknown significance. Must admit though, what it all means mostly goes well beyond my current understanding. Hope you’re feeling better!
Blue, as Lori said, Herceptin and Perjeta are now likely to be included in your treatment and they generally are fairly well tolerated. I too used to have the drippy nose, which I always thought was Herceptin but now I’m on Herceptin without the Perjeta and voila - no runny nose. Celebrate the small things
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Margarita I'm hoping it's just because it was the first dose and that next time will be easier. But even if I have 2-3 days of hell out of every 3 week cycle I can deal with it. They did an anti-nausea and a steroid for pre-meds. If this works and I stay on it long term I am definitely going to ask to wean off the steroid, but I've had enough queasiness that I'll stick with the anti-nausea for a while.
I had CDx genome sequencing done by Foundation One, and the report lists my Microsatellite Status and Tumor Mutational Burden. I would think that any company doing genome sequencing would also test for those two things because they seem to play a pretty big role in precision oncology. I received a 27-page report from F1 and I think they do a pretty good job of explaining a lot of it - for example because I'm MS-Stable, it says that based on clinical evidence I am less likely to respond to anti-PD-1 immune checkpoint inhibitors, including nivolumab and pembrolizumab. Somebody who is MSI-High (like you) might have a better chance with those drugs.
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Dear Lori,
Hope you are doing well on the new medicines. My MRI results were good and I see the surgeon on the 25. The skin thickening is almost gone and tumour has shrunk and lymph nodes are all gone. I agree this MRI must have been designed by a man the most uncomfortable machine ever
I wish the new treatment works very well for you and you are in my thoughts and prayers always.
Regards
Flora
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Thank you Flora. It took a week for the nausea and headaches to settle down, but I woke up today feeling almost normal. My infusions are every 3 weeks, so even if it's this rough every time I'll still have two good weeks to enjoy out of each cycle. Sometimes that's all we can ask for.
Glad to hear that your MRI results showed good response to chemo, that is great news!
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Hi, all. It's snowing like crazy here in Colorado--first snow, which everyone (well, almost everyone) looks forward to and celebrates.
Lori, I'm sorry you're on the chemo treadmill again but glad you're feeling better today. Your explanation of the genome sequencing is awe-inspiring. There is SO much to be learned about this disease, isn't there? It makes me crazy when I hear people claim that "big pharma" works against finding a "cure for cancer" because it would decrease their profits. Like it's a simple finger-snap to produce a pill that would cure every form of cancer there is.
My old California friends said there's a lot of hot wind and fire danger there now, so I hope this year the fires are a non-issue!
Flora, glad you're doing well and the chemo is kicking the cancer's butt. I've only had one breast MRI but if I ever need another there will be serious drugs involved. It was mondo uncomfortable.
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SB hope you enjoy the first snow of the year, I bet everything looks beautiful!
Thanks to the PG&E fiasco, power is being cut to almost the entire western half of California during this red flag event in an attempt to prevent the lines from starting fires. PG&E affects the biggest number of customers, but SCE and SDG&E are also cutting power to a large number of people. Everyone has been told that if power is shut off it could take up to a week to have power restored because every line needs to be physically inspected before power can be turned back on. As of right now the planned outages go right to the town next to me, so I "think" I'll be okay, but winds have just started picking up down this way so we'll see how it goes.
Yeah those people drive me crazy too, especially when they try to talk me out of doing chemo. They are usually the same people who take every alternative supplement & drug under the sun hoping that one of them will be the magic cure. I really laugh when they combine the regimens from multiple cancer "gurus". If any one of those gurus had the "cure" then the others would be fake.
Genome sequencing (NGS) is still in its infancy and only a small percentage of people find anything of benefit right now. My MO tried to talk me out of it but I insisted, mainly because I wanted to qualify for any future NCI-Match trials so I wanted it done by an NCI-approved lab. It did turn out to be mostly a waste of money in my case since the only actionable biomarker found was ERBB2 (HER2), and all of the recommended treatments and trials were for HER2. I had one biomarker that is only present in 1% of all breast cancers and another that shows up in 9%, so neither of them are currently being investigated or have a treatment. I can still hope that one of the VUS will become relevant in the future.
It does seem like they are moving in the right direction with precision oncology and I hope they continue to make progress, I fear the pace just isn't fast enough for someone like me but I have hope for the future.
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I vaguely remember that during my first breast MRI the technician said something about the set up they had was unique or first in the country, the details are fuzzy. I guess I was really lucky because I was not uncomfortable, and I was able to get used to them enough that I started dozing off. Of course it helped that the two women who ran all the research MRIs were absolutely amazing. The MRI guided biopsy was another story... that was not fun!
I finally have started radiation. Yay! Should start Herceptin/Perjeta soon.
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LoriCA: really admire your attitude! Hope you get to enjoy the 2 good weeks. And, most importantly, the treatment is beating down the cancer!
Flo80: congrats on the good MRI result!
Blue22: yay, hope the radiation zap those stubborn buggers away!
You ladies are in my thoughts and prayers!
Regarding breast MRI, I don’t recall being uncomfortable (selective memory?) other than always having a technician couldn’t find a suitable vein for the contrast. Hope the technology will be advanced enough soon, any barbaric machine will be replaced.0 -
I've received the "nothing more they can do" speech. Referring to curative chemo. Well, we knew this already, but now what ?
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Oh Amarantha, I'm so sorry. I can only imagine how hard it is to hear that and you've been through so much. Did they really say you are just out of curative options? It was made clear to me up front that none of my treatment has been curative, it's all been palliative, so maybe they don't mean there's nothing at all left, or did they refer you to hospice? Did they stop your current chemo? Maybe time for a second opinion? I'm so sorry, I wish I knew what to say, but I'm there with you in spirit holding your hand and giving you a gentle hug.
Blue I hope radiation goes well with minimal SEs for you.
Thank you Leslie!
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