ER-, PR-, Her2+ Roll call
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@grammie2. Yeah, regarding my infusion schedule, I would think the H&P would be more important than the T. Maybe its because it's low dose Taxol? I'll contact my doctor about it. Thank you.
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I'm sure they have a good reason for your particular plan! I was just curious to learn all of the different options and the why's.
How's everyone's day going? @beekaycro24 are you feeling better? Less tired?
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NO! I've been fighting off a cold, on top of dealing with my infusion side effects. I've come to the conclusion I'm just going to have to force myself to walk a little every day, like I did after my lumpectomy. I've got to get my energy back somehow. I also just got hearing aids…the world is SO loud! lol You don't realize what you weren't hearing until you get good hearing…ha! Crazy to think my hearing aids are at 80% and will eventually be at 100%. I can't imagine being louder than now. I hear every little thing. My hearing loss was from an auto accident I was in at the end of February. The airbags deployed so loudly that it damaged my hearing. :/ If it's not one thing, it's another. I'll get there ladies…slowly but surely!
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Shucks @beekaycro24 I was hoping that you were doing better! I think I became more tired towards the end of Phesgo. When I started back after surgery, I really didn't have a lot of SE's with it. But I started having a little tummy issues, mild taste weirdness and tiredness towards the last 4 injections. Edema just kept getting worse. Do you get neulasta or another immune building med like we did with TCHP?
Glad you are hearing well now! Hearing loss runs in my hubbies family. His mom has had hearing aides for years. Hope you adjust well with them.
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@jessybessy so sorry to hear about your kiddo having a rough time. I have 3 boys- during my BMX which was a rough recovery for me, my boys were trying to put on a brave face. Youngest was in 1st grade while other two were in 8 and 9th grade. It was an emotional time. My oldest did not do well that year academically. Transitioning to highschool was tough by itself, plus past COVID school chaos. I think a counselor is a great idea or family support. Both sets of grandparents visited during my recovery. Plus I had my friends and neighbors bring desserts for the kids when anyone asked what can I do to help! That really cheered them up! They eventually adjusted and life goes on...oldest just went to prom last week!
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Well, ladies...I have double pneumonia and have been admitted into the hospital at least for one night. My oxygen levels have been low the past few days, and I just would be so exhausted from the easiest task. I also would get a fever on different days...nothing too high or anything (didn't even hit 100 most times). I messaged my oncologist through my medical portal this morning to let him know my oxygen level was 80. I also had a fever of 103.6 last night. He said if it doesn't come up, go to the ER. I got dressed and hubs brought me to the ER. They were concerned about sepsis (all clear!) and blood clots (none!). I've had a chest x-ray and a CT scan with contrast. Both show the pneumonia and a mildly enlarged heart, which sounds scary but I'm not going there right now. I'm hooked up to a heart monitor as well. Here's to getting better! I hope you all have a great, relaxing Memorial Day Weekend!!
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@beekaycro24 I was hoping you would most post with more details than FB. I am so sorry, but also glad you are getting treated for this. And maybe…the tiredness won't be a SE of Kadcyla like maybe your thoughts were leaning to. So once you get the pneumonia cleared, you will be back to yourself!! Get lots of rest and feel better!!!
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Oh @beekaycro24 I am so sorry you are dealing with this. I had a terrible flu during immunotherapy and I swear, I had never been so sick. I had a fever of 102…just short of them making me go to ER. I wish I could bring you some flowers. Please get better soon! Hospitals aren’t terribly restful tho, unfortunately. Sending up prayers for a quick recovery. D
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@beekaycro24 I'm sending u get well soon vibes! With some beautiful 🌺! Once those antibiotics kick in, you will be home soon.
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So sorry to hear about your pneumonia @beekaycro24. I hope you recover soon.
So Thursday was an absolute nightmare. Had chills, my eyeballs hurt, nausea/vomiting (compazine didn't help), extreme fatigue. My BP was all over the place.
Friday, felt much better. No nausea/vomiting. No BP issues, no chills. I'm hoping that Thursday was the exception and that most days will be like Friday.
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@beekaycro24 I did find your tiredness a bit strange, because you seemed to be doing well with Kadcyla, and from what I’ve heard, the first 2 or 3 sessions are usually the toughest, and then it tends to get better, so it didn’t really make sense to me! The problem with pneumonia is exactly that: sepsis - when it’s not diagnosed in time. So I’m really glad you’re already getting treatment 😊 I’m sure you’ll be feeling much better in no time! Take care of yourself, try to stay strong, and I’m wishing you a speedy recovery. Keep us updated. A big hug 🌼
@jessybessy how are you coping with your little one? Unfortunately, they suffer too 🥺 it’s impossible to shield them completely… It’s hard to know what to do, but taking him to see a psychologist sounds like a great idea to me! Stay strong. Things are starting to get back to normal 🫂🌻
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@chocomousse your treatment plan really is a bit different, but the doctors know what they’re doing. Supposedly, the anti-nausea medication should work. I had the “red chemo,” which causes a LOT of nausea, it was awful, but with the anti-nausea meds I managed to avoid actually throwing up. With THP I was lucky not to have any nausea, but my nails were a mess (still haven’t recovered even after six months) and I had terrible mouth sores. But everything passes... Try to take care of yourself the best way you can, fortunately, the symptoms usually ease between infusions, and sooner than you think, you’ll be done with all this. Stay strong! 💪🍀🌷
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@chocomousse I had really low BP the first few days after chemo. Prior to chemo, my BP was on the high side. But chemo made it really low. My MO gave me numbers to watch for and if they dropped below that and stayed consistent for a couple of hours to call them. I could just tell when my BP was off. I knew the first three days after chemo I needed to watch it and try to increase my activity if my BP was low. I found that if I increased my water intake those first three days, it really helped my BP. I hope you can find a "fix" for it.
I hope everyone is doing well. I'm getting a little nervous about my first mammo after treatment. My lumpectomy side is still swelling, sore and just not normal. My MO and RO agreed I had thickened skin and I am worried this will be a red flag during the mammo. Still struggling with what this post therapy life will look like. I've been very calmly saying that these muscle pain/spasms are Phesgo related. The edema as well (which MO has agreed it should calm down weeks after treatment). Weird stomach/pooh issues I've left to targeted therapy as well. Just concerned that all of these supposedly targeted therapy SE's turn into more later. Sorry ladies. Having a ho hum kinda night LOL.
Hugs and so much gratitude for all of you during this journey!!! You guys have helped me tremendously!!
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I was transferred via ambulance with sirens blaring (another first for me) to a bigger hospital in Gainesville (which is where I received all TCHP treatments). I'm in the Medical Critical Care unit since it handles multiple medical diagnoses at once. Thanks all for your kind words!! They're trying to figure out if my pneupneumonia is bacterial, from radiation, or from Kadcyla. My onc came by and said if it's Kadcyla, it's extremely rare. He thinks it's from radiation, but still waiting on different testing to see. Right now I'm getting anti-biotics and steroids, plus the biggest Potassium pills EVER…lol.
@chocomousse I hope your side effects go by quickly!!
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Prayers for you @beekaycro24 !! I'm sure they will figure out the cause of pneumonia soon!! You have been such a trooper for all of your SE's and I'm sure they will figure it out soon! I'm glad you are in a facility that is better suited for your treatment! They will have you feeling better I'm sure! Our journey's are complicated and it's good you are where they treated you! Praying for you!!
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@beekaycro24 being in hospital is no fun. Do everything you can to be comfortable..ear plugs, night shades, aromatherapy, meditation/breathing whatever works to get you to relax..less stress, body heals faster!
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Well, it looks like it's Kadcyla induced pneumonitis. I will have to stop the Kadcyla treatments. My onc wants me to heal before discussing my options. Pneumonitis is absolutley no fun!
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@beekaycro24 so sorry!! That really stinks! Continued prayers for healing!! Keep us posted please!! Hugs, hugs and more hugs!
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@beekaycro24 how are you feeling today? And @chocomousse how are you doing with treatments?? @jessybessy I hope things are going better with your child! Giving all of you a big hug!!
Hope everyone is doing well and that is the reason for the quietness here! I am anxious about my mammo today. Fear it is not going to be painless LOL. My seroma and swelling makes that side a tad sore. And I happened to think about the port last night. I always try to be careful how I sleep because of it and got to thinking about being smooshed during mammo. I know I am not the first person with a port to get a mammo so I'm sure it will be fine. I'm still a little freaky about the port!!
Hugs and love to all!!
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@grammie2 hi there, I have been busy packing for a move to our “retirement house” but reading every post, praying for all. Fwiw, my port didn’t bother me for my last mammo but my surgery breast sure did. Luckily it was quick. I did shed a tear from it..be well all!
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Thanks @djschmidt1 ! How exciting for a new beginning! Retirement is in my radar for sure and I'm looking forward to it. I hope it is for you too!!
The appointment went well. I def. let her know how anxious I was and my concerns. She was very kind and understanding. I didn't have a lot of pain during it but it really surprised me how she mashed on and moved my port! The port has freaked me out from day 1 and I hardly touch it LOL. She did one with the port mashed in but did one without as well. She said sometimes the metal from the port makes the image black. I didn't know what they would tell me today so I wasn't expecting a lot of info. After she did the mammo, she explained they would review the images and determine if any further tests were needed. My MO who ordered the mammo had an ultrasound ordered as needed. She took me back to the area where we do the robes and said she would be back with more info shortly. I waited maybe 10 mins. and she came back stating all was well, see you in 6 months. I was shocked I guess because I just felt like it would take more than that to make sure that there was nothing weird going on in those girls LOL. I was so thankful and was thanking God as I went out to the waiting room where my hubbie was waiting. I was in tears at this point and scared the pooh out of him. He should know I cry at everything and that tears are sometimes good LOL! I've still not found the results online and pray that what I understood from the nurse still stands after further review!!!
So thankful for this group as well!! I hope all are well!!
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So happy to hear @grammie2!
My 2nd infusion didn't go so well. After the pre-pre-meds and about 10 minutes into the Taxol infusion, my chest tightened to the point that I couldn't breath. The infusion nurses stopped the drip and rushed to give me a shot of steroids as they noticed I was having an allergic reaction. The steroids worked quickly to open up my lungs and I could breathe again. The odd thing is that I tolerated the 1st THP loading dose infusion last week just fine and now, I'm allergic Taxol. Ugh. I sent my doctor a message asking what the treatment plan would be moving forward, using a lower dose of Taxol, switching to Taxotere, removing the taxanes completely. I did some research and found that Abraxane could work but it carries a higher risk of neuropathy.
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Oh @chocomousse I'm sorry you are having reactions to the meds. I have a friend who was +++ and couldn't do TCHP because she had an allergic reaction. She talked about how scary it was and I'm so sorry you experienced that too! They did switch her "T" but I can't remember which they ended up giving her. Does you center give you steroids to start taking the day or two before treatment, then also in the IV on day of? Mine did. I hope they can figure out a plan you are able to tolerate!
@beekaycro24 I am getting a little worried about you my friend!!! You've been silent the past couple of days. I am praying you are healing well so they can determine your new game plan. Much love and hugs!
I hope everyone else is doing well!
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Hi Grammie2. I was pre-medicated with the benadryl, decadron, pepcid and zofran on the day of the appt., shortly before the Taxol was started.
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@chocomousse I figured you were getting those pre-meds. I have never been a good pill taker and having to remember to start the steroid and anti nausea pills two days before treatment and a couple of days after was hard for me. I always hate taking meds! I will suffer a headache for a few hours before I break down and take something. I've gotten better with that since chemo for sure though! I hope they can find something you can tolerate!
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@beekaycro24 sending u healing vibes and hugs. I'm hoping that u get to go home soon to rest .
@grammie2 very happy for u and your tears of joy! The port being smashed during mammo and coming out fine? Whoa!
@chocomousse please keep us posted about what treatment is offered given taxol allergy.
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Hi ladies. I reached out to a family member of beekaycro because she hadn't responded in a while from my messages on Facebook. I explained to her that I knew her from this group and why I was messaging. She could really use all of prayers right now!
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It's been 10 years since I've been in active treatment - but I am still ER/PR minus & HER2 plus. I agree Grammie. Worried about beekaycro. Holding her close.
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Hello everyone! I’ve been away for a few days — I went to visit my sister in Scandinavia and we took the chance to visit a few countries around there (I went to 4 countries in total – and it felt really good). Yesterday I had another dose of Herceptin, and next Saturday I’m getting my port removed, and I must admit I’m a bit scared. It’s so nice to hear from you all! But what’s really worrying me right now is our friend @beekaycro24. I hope she’s doing well and gives us an update soon. I’ll be rooting for her!
@grammie2 please let us know if you hear anything.
Wishing good health to all of you! 🌼
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