IBC lounge: roll call, support and just a good place to hang out
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Our bodies do need sleep to heal. And that’s when our immune systems really get to work on our bodies. But, sorry that treatment is so tough on you Lori, and those rigors must be very frightening.
Yes, lurking outside of social media could seem like you are up to no good. Lurking here is fine, since you get to catch up on your posting buddies without having to comment. Nobody writes a long post better than Lori and I always learn so much about HER2+ treatment.
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There's been so much conjecture here that COVID has been around longer than we initially believed, and everyone who had a viral illness in December, January or February was convinced they'd probably had it and were now immune. My hubs and I had a wretched virus the end of January. I've never seen him so ill--he passed out twice! We both coughed for weeks. I knew the chances were slim--if people were passing around this virus earlier, the public health monitoring systems would have gone wild--but if I happened to be immune I wanted to donate convalescent plasma.
We were both tested Wednesday for the COVID antibodies, which would have shown if we'd had the disease and developed antibodies to the virus. Both negative. Rats.
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Lots of people saying they thought they had it in Dec/Jan/Feb because they had bad flu symptoms. I'm pretty sure I had the flu in early January. But the actual percentage of positive test results is around 10% in the US, so 90% of people who think they have it, don't. That makes me a bit skeptical of the claims that it was circulating widely that early. And I agree with you, if it had been circulating earlier at the rate some are hypothesizing, our healthcare system would have seen some indication of it. Sorry you weren't able to act on your good intentions SB.
My latest development - not sure if I mentioned that my fevers have been trending higher. Kadcyla directs the immune system to attack cancer cells and is a type of targeted immunotherapy. Low-grade fevers are a known side effect, part of the immune response, and I've had low-grade fevers since I started this chemo. I monitor my temperature religiously throughout the day and have seen it trending higher recently. After my last two infusions I woke in the middle of the night with intense rigors and a fever of 101.7. I was able to bring the fever down with ibuprofen and an ice bag on my head and neck, but it was a very frightening situation. My onc thinks I'm headed toward a cytokine storm, same thing that has been killing many COVid-19 patients when the immune system starts attacking healthy cells and tissue like lungs and heart. Just had infusion yesterday and we're going to see if we can head off the intense immune response and fever this time. If not I may have to stop this treatment because my immune system is overreacting to it.
And my hemoglobin and hematocrit were higher again.
Not sure if I mentioned the bleeding episode I had two weeks ago, or the headache that knocked me out for 3 days straight. All I could do was sleep around the clock to escape the pain. Polycythemia affects memory and I can't remember what I said or did 5 minutes ago sometimes.COVID-19 causes treatment complications. They originally wanted me to wait until the situation settled down before having my next echo, but with everything else going on in my body now they are insisting I have it done before my next infusion to make sure my heart is okay since Kadcyla is cardiotoxic.
It's hard to explain how I can feel like crap most of the time right now, but still am doing okay, feel healthy and strong enough to deal with all of these complications and just need to push through it.
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Hi Sbelizabeth,
I am sorry that you and your husband had to go through this. I also had a very bad cold around 8 March and took like three weeks to get better. I also not sure if that was common cold or something else. I think you are right this might be going around by January in our countries.
Regards
Flira
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Dear Lori,
I am so sorry that you have to go through this and I pray that Kadcyla this time does not cause much problems. You are so strong and your positive attitude will get you through any storm. I get so much strength after reading your posts. Thank you so much for being there for us and I pray that you continue to feel strong and healthy.
Love
Flor
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Hello everyone,
I posted in Feb 2020 under "Triple Positive" and would like to recap my sister's BC journey thus far.I want to thank everyone who read my post and I apologize for the delay in response. In Feb we were waiting for skin biopsy results and 1 came back negative and 1 came back positive.She was clinically diagnosed with IBC on March 3rd. I have been her " informant" and she allows me to post on her behalf.I have read some of your stories and praise you for your strength, courage, and positive attitude. I cannot begin to know how it feels, but I truly care and my heart goes out to each and every one of you. I can only experience this through my sister and I already realize how tough of a fight it is from the get go.
My sister began chemo treatment and is doing quite well. Upon diagnosis her clinical features were breast swelling ( double in size) skin thickening, redness, warmth, slightly inverted nipple and a small area of peu d'orange. She also has a 2.5 cm mass identifiable on her mammogram. Her concern at this time is that her breast has not physically changed much except that her breast feels softer since 4 rounds of a/c chemo. She is still waiting for a petscan ..... Our whole system is backlogged due to Covid. Her MO thinks they are on the right track. Does anyone know if physical presentation equates with how well the chemo is working or does chemo make the breast redder and swollen as a side effect? I appreciate any feedback
Blessing to you all and Happy Mothers Day.
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I have added the diagnostic profile. Hope it worked.
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Welcome back Shela, Sounds like your sister is doing neoadjuvant treatment, which means chemo before surgery (likely followed by radiation). You mention that the redness is still there, but what about the lump? You wont likely get a scan until after chemo, but does it feel like it has shrunk? Remember that the breast will be removed after chemo, so its appearance (and the tumor) is not going to be important in the long run. I'm hoping that your MO is leveling with you and right now I think you should assume the best for this initial phase of treatment.
Keep us posted.
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Hi Traveltext,
Thanks for your reply. The lump was never palpable. It was found on the mammogram. It is located 5 cm behind the nipple. She never felt a lump but a ridge-like firmness in one area and painful engorgement .She now says it feels more squishy.
We are quite happy with her oncologist as he is held in very high regard as the head breast cancer researcher of the cancer agency.He is quite confident with her treatment plans and a straight shooter. I think it is my sister's fear and not knowing what to expect without a pet scan. I think it is reassurance she is looking for at this point. Will keep you posted. She will be starting Taxol with Herceptin and Perjecta next week. Fingers crossed for and easy transition.
Will hope for the best, Thank you for your encouragement.
Good night
ND
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Hello I am new to the site. Hoping to talk to others about my symptoms. I am waiting for the hospital to call me with scan appointment. I’m sure Covid-19 is not helping the speed of any appointments. A few weeks ago there were a few small bumps next to my nipple. The very next day my breast swelled up, turned red, was burning and itchy. I called my doctor and he prescribed antibiotics, the red lightened up the swelling went down so he prescribed another week of antibiotics. My breast now looks like purple blotches and my areola is pale, it never returned to a brown colour. I called my doctor and he said I would hear from the hospital within the next 7 days to schedule a scan and it they don’t call me with an appointment within that time to call him.
So needless to say ...I am worried. They say don’t read anything on the internet but when your boob is swollen, red and burning, your going to look that up. I am 55 so ..not breastfeeding. Can this be inflammatory breast cancer or something that has the same symptoms. I am worried because the antibiotics don’t seem to be making a change. Also the skin around my areola is peeling. Any thoughts? Thank you
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Welcome Lauren, I’ve been here for nearly six years now and I’ve read a number of stories, more or less like yours, from worried people. Now, I’m not a doctor, so I want you to get checked out properly, but, without exception, these people have been found not to have IBC. Please keep us posted with your medical news, and, meanwhile, try not to worry.
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I went in today for a mammogram and MRI - screening for my remaining breast. I always try to go with the attitude they won't find anything, but that has not served me well... They found changes in my breast since the last mammogram (6 mo ago) including a cluster of microcalcifications. I really wish they had done a double mastectomy instead of mastectomy and lumpectomy, but that was not what the surgeon thought was best. I am going in next week for a biopsy. I'm just frustrated and upset. It is a strange situation - in a way I can consider myself "lucky" that I am high enough risk to actually get a mammogram and MRI right now, but obviously unlucky that it might be revealing something.
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Hi Blue22 praying for you and praying it be nothing. Sending a big hug your way. Please stay positive and we all are praying for you.
Love
Flora
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Hello everyone
Blue22 sorry to hear about your situation. Wishing you good results.
Still very new to this forum.Just to recap my siater is doing second part of chemo taxol with herceptin and perjecta. She had a very bad reaction to the taxol herceptin combo during the last hour of her infusion.She started to shake uncontrollably, flushed face and bp skyrocketed.The nurse called the dr immediately and the infusion was stopped and she was given benadryl and dexamethasone and then was monitored for 2 hours.
Anyone familiar with these side effects? The following day she had flu like aches joint pain and extreme fatigue.
She seemed to tolerate ac much better.
Any thoughts?
With gratitude
Shela
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Dear Lori,
How are you? How are things in California in this lockdown? I am done staying at home and chasing my five year old.
Regards
Flira
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Shiela I hope your sister is feeling better now. I don’t have this experience with herceptin and perjeta as I am getting it after the surgery. Did you speak to the doctor about this. Was it an allergic reaction ? I guess that’s abt the nurses monitor you after every herceptin and perjeta infusion.
RegardsFlor
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Hi Flo thanks for replying.
She had an infusion adverse reaction. Whether it was the dose density or rate of infusion that triggered this response I do not know. She did not get hives or throat swelling or trouble breathing. They gave her benadryl to counteract the effects and I think they finished the infusion. You are such brave women ! I visited my sister yesterday socially distant of course and she was a mess. muscle joint pain, numbness in hands and feet. She is not tolerating this chemo regime of taxol herceptin perjecta.
Did you happen to receive taxol as part of your chemo?
Kindly
Shela
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Hi Shela,
I hope your sister is feeling better now. Have her ice her feet and hands as that will help with neuropathy. For me I did not have any allergic reaction to Taxol and now with Herceptin and it’s fine. I only have lot of body pain and neuropathy. Hope your sister feels better. Sending prayers and wishing her happiness and good health always.
Regards
Flor
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Hi Flora - thank you for your well wishes!
I had my biopsy yesterday and it went fine. I had joked with the nurse earlier that I am getting all the different biopsy types... mammogram guided, MRI guided, ultrasound guided, FNA and punch. I've seen lumpectomy described as surgical biopsy - so that would be one more... and for most of those biopsies I've had multiple.
Shela - I am like Flo - I didn't start Herceptin/Perjetta until after surgery. I had Taxol and did have allergic reaction - but not during the infusion. Instead I had a bad rash all over. Two of the worst places were my feet and my butt. The doctor switched me to Abraxane. It sounds like your sister is having different reactions.
I remember getting benadryl and dexamethasone as pre-meds prior to Taxol. I don't recall if they were for all the Taxol infusions or just some, but I do remember getting them. I think there was also a pause in between. I also had additional meds as part of a clinical trial. Good luck to your sister! I know this is tough and can be scary at times.
Best wishes to everyone in this group!!!
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Hi Flo and Blue, My sister will be getting pre chemo meds, so hopefully that improves her tolerance.Yes, she is definitely finding it tough right now. She pretty much breezed through A/C in comparison. She is feeling a little better today
She will mention the Abraxane to her MO.Thank you for all your feedback. Such a gift to be a part of your forum
Blue: Wishing you good results with the biopsy, sending a prayer your way.
Have a good everyone !
Kindly
Shela
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I meant a Good Evening ! lol
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Good day everyone,
Has anyone had Taxol/herceptin/perjecta chemo combo before surgery?
Thanks
kindly,
Shela
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Dear Shela, most of the people (Her2+ people) get this combo but usually it is Taxotere, not Taxol, as per CLEOPATRA clinical trial results... Taxol belongs to the same taxane family though, so might be also used in the protocol. Saulius
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Hi BSandra,
Thanks for your the insight. I read about the Cleopatra trial and hopefully this taxane works just as effectively.
kindly,
Shela
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Dear Shela, yes, in certain cases paclitaxel (Taxol) is very efficient, while docetaxel (Taxotere) is known to affect very wide variety of cancer cells. There's another taxane in the family - nab-paclitaxel (Abraxane), a very modern version of paclitaxel that dissolves slower in the body. They are also working on oral taxane - Tesetaxel. It was very promising in clinical trials (not over), and achieved high response rates even in taxane-pretreated/taxane-resistant patients. Let's keep an eye on Tesetaxel, it is really a very promising drug. Saulius
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Hi Saulius
Thanks.Great information.I will definitely make a mental note of that. I am new to this thread and I am posting on behalf of my dear sister. I am grateful for such an enrinched source of knowledge and support each member has already provided me.I read a lot and try to educate myself as much as possible about IBC.However, I find that following this forum is more effective in gaining perspective.
Kindly
Shela
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Shela I did Taxol with Herceptin and Perjeta. The load dose can be pretty rough and it took a few infusions before my body adjusted to the drugs. In the beginning I would feel like I'd been run over by a truck. Tell your sister that she wants to make sure they are doing 60 minute infusions for each of the drugs, not 30. That will lessen the side effects. Some women even go to 90 minute infusions, but I found that 60 minutes each made for a long enough day with pre-meds, flushes between each drug, and usually a bag of hydration fluids at the end. Many women find that Claritan (generic is loratadine) helps with the bone and muscle pain.
Blue sorry to hear that you have more worries, I hope it turns out to be nothing. Are they going to biopsy?
Thanks Flora, I'm in the midst of a round of tests & scans. Everything is so much more complicated now with COVID-19. I have to have a negative coronavirus test before I can even step foot in the hospital for any kind of procedure, even a scan. We think we got the overactive immune response under control, no issues from my last two infusions, but they're trying to find out what's going on with me because a bunch of numbers from my lab work have been too high, not just the polycythemia.
2.5+ years on cardiotoxic drugs and my LVEF is still 67, so that's great news. At least my heart is staying strong.
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Lori, how good to see your post. With all you've been through and now coronavirus! I'd like to have a chat with the "fairness" fairy and lodge a complaint. How do they manage the testing before you're able to access the hospital--test and then get back to you with the results? How long does that take each time?
I took loratadine (cheap at Costco) every round of chemo and it worked great at suppressing the bone pain. I found it was the Neulasta that caused the most pain. I didn't take it the first couple of days during one chemo round just to see if it really worked, and it sure did.
Hope the tests and scans come out well, and if not, that the results lead you to effective treatment. SB
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SB they use a drive-up rapid testing site and call with the results within 2 hours. It's not a community testing site, it's run by my hospital healthcare system at one of their off-site Urgent Care clinics. For a Monday morning echo I had to have the test on the Saturday before.
I'd like to have a word with the fairness fairy too!
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Hi Everybody,
Thank you for the kind responses. My biopsy came back negative - a huge relief. I wouldn't allow myself to think much about what was going on, since it would serve no purpose, but a positive biopsy in the other breast while on Herceptin/Perjetta, Xeloda and Zoladex seem pretty damn scary, especially since the last mammo was only 6 months ago.
Lori I am glad you are still doing ok and sorry about the extra stress of Coronaviris issues. I have heard of patients unable to get treatment and/or screenings right now. It is evidence of how serious IBC is that we can still get relatively normal treatment right now. Sometimes that is a bit sobering to think about.
Shela I hope they are able to figure out how to help your sister better handle her infusions. When is the next one?
Blue
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