IBC lounge: roll call, support and just a good place to hang out
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LW422, I found that my hands and feet would swell more when it was warm, was being treated over the summer and the steroids caused some swelling as well. I drank a ton of water to help with the swelling as well. Can't speak to the kidney numbers though. I usually found the swelling went away by the time of the next infusion. Hope this is helpful.
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Hi Mara, and thanks for the reply. Thankfully the swelling resolved itself in a day or so; my hands and feet are back to being their old "veiny" selves. I have had a truly rough week with AC and not sure I'll be able to do this, though. My MO made the mistake of messaging me yesterday to ask how I'm feeling and he got the unvarnished truth... I'm not sure this is worth it. I told him I don't want to go through this hell to die anyway; I'd rather be in palliative care and at least feel like myself.
So I'm feeling really down and discouraged these days in my new life as "Cancer Person."
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LW422, I can imagine, you are less than 6 months from a scary diagnosis. I was exactly where you are at the time when I was diagnosed.
I just want to encourage you not to give up so soon, IBC usually responds well to chemotherapy according to my oncologist. Yes I am stage IV but I was originally dx in 2015 and have no visible cancer now in regular scans every three to six months. It wasn't easy and I still take Herceptin every three weeks but life is fairly normal for me. If you need to PM me for anything, let me know and I will answer.
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Thanks so much for your kindness, Mara. I know I'm behaving like a child but I just hate this stupid chemo SO MUCH. I know it will hopefully save my life but it's really hard. Thanks for listening.
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It is not childish behaviour, these drugs are no joke and do not every give yourself a hard time because it is a struggle. I hated the chemo when I was on it too.
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Thank you again, Mara. I'm feeling a bit better today as far as queasiness and being unsteady on my feet. Still feel generally weird and having trouble with my eyesight, which is annoying. I'm going without nausea medication today so I hope that isn't a mistake.
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You will know if you need it, think of a light meal with lots of protein in it and if you even think there is a hint of queasiness, take the antinausea. I also recommend digestive enzymes. I found that all the steroids and different drugs I have been on, ruined my digestion and gave me side effects when eating certain foods. I don't have trouble with anything I eat now. I don't mean pre or probiotics either. Just a simple straight up digestive enzyme. Will help your tummy out a lot.
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Hi, everyone. Unfortunately, I’m new here. I was diagnosed today with both IBC and Paget’s. I understand that they are both very rare. Has anyone ever heard of this before? I’m still waiting on stagingbut know that I’m ER-/PR-, HER+ I’m feeling very overwhelmed with the whirlwind of appointments and the look of pity I seem to be getting from absolutely everyone. My poor husband is a wreck and I can’t even comfort him because I am just numb. I just thought I’d reach out here to people that have may some similar experiences.
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Hello Zakheat and welcome to the place none of us wanted to be. I'm sorry to hear of your diagnosis, but take heart and know that there are treatments for IBC that have much better outcomes than in the past. I don't know about Pagets, other than a few posts I've read here on the forum.
I began treatment for IBC/IDC in February and am in chemo for a few more weeks. Typical IBC treatment is chemo, surgery, radiation. I'm not sure how the Paget's diagnosis will impact the IBC treatment, but I suspect that your treatment will follow a similar path. The chemo first is to try to keep the cancer from spreading to other organs, bones, etc. and to help shrink tumors if you have them. Chemo is usually very effective on aggressive cancers, so take heart.
You will be on an emotional rollercoaster for many weeks/months to come, just like most of us. Be kind to yourself and to your husband; it's rough but you both can do this. My very best wishes to you... and PLEASE don't google. There's too much old and outdated information out there that has no bearing on current outcomes.
The forum is usually quiet on weekends, but post any questions you have and some of us will try to help you answer them.
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Hey Mara. Thanks again for your help and encouragement. Thankfully I began to feel more normal yesterday and still pretty good today. I'm hoping the worst of the SEs is over until my next chemo... ugh. I know I have to do this so I might as well pull up my big girl panties and get on with it.
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LW422, I always found on the AC that I felt pretty good for the first couple of days post chemo due to steroids, really crappy one day after they were out of my system then felt better again. So for the 3 weeks between, I felt good for about 2 and a half weeks. I actually tolerated that chemo well, the Taxol gave me worse side effects and was dropped.
Don't tell yourself to pull up your big girl pants unless this is motivating for you and makes you feel better day by day. Getting treatment, getting up in the morning and facing each day is an accomplishment. You should find that you feel better closer to the AC. If you get neulasta for the white blood cells, take claritin the day before, day of and day after the injections to avoid wicked bone pain.
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Zakheat, take a breath. You will have many appointments and tests for staging and lots of appointments before you settle into treatment plans etc. I will tell you that HER2+ and fast growing cancers do respond well to chemo. After chemo is done, they start giving Herceptin unless you have heart issues but those are tracked every 3 months. Herceptin is easier as well because it only targets the protein.
I have been dealing with cancer for 6 years now. My oncologist said I was actually stage 4 because the brain already had cancer cells that were too small to see. I have not had any cancer show up from the neck down since my mastectomy, radiation and chemo was done.
My brain is also stable as well after two rounds of radiation. Nothing wrong there for 3 years. You can definitely have a decent life and go on. Stay off google about survival stats too. I scared the shit out of myself looking all that up. Survival stats don't take into account treatments that are better than they used to be and your overall health. When you are less overwhelmed, exercise like walking can do wonder for fatigue and such.
I hope the best for all here who are not stage IV that you finish treatment and get to take a break from it all but that if it comes back, we can go a long time after Stage IV as well.
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Mara--good point about the big girl panties; it doesn't motivate me at all.
Honestly, nothing motivates me much these days; just struggling to get through treatment. The best motivation comes from people like you who have been through the gristmill of treatment and can help us struggling with chemo along the way. So thank you again; it is appreciated. I feel OK but not great; I get tired so easily. I could whine for hours but everyone here already knows the drill.
I hope everyone has a safe Memorial Day weekend (USA).
Zakheat--thinking of you and hoping that you are feeling OK. Once treatment is started you'll be amazed at how things settle down. Let us know how you're doing.
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Thanks for the kind words everyone. I officially have appointments for my echo, chest/ab/pelvis CT, bone scan, and port placement. They’ve decided on the TCHP regimen for my chemo (taxotere, carboplatin, herceptin, and perjeta) and I’m supposed to start the week after next. I’m nervous about the chemo. I’m a kindergarten teacher and I’ve just ended the school year. That gives me the summer to deal with some of this but I will be full swing when school starts back. I worry about being able to return and/or the reactions of my students and their families. My family is being very supportive. My husband has calmed down a bit while reality is sinking in for me. Essentially, we have traded places emotionally. One day at a time, I guess. I have learned so much from the posts here. I hope you all keep it up.
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I am glad you have a good support system, so important to have.
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oh dear LW422, I’m so sorry to hear u had a hard time with AC #1. Chemo really is hell. No denying that. I went to hell & back with my last carbo combo. I was in bed for 3 straight days with severe nausea & dehydration. I cud not drink anything. Almost ended up being admitted. Had to get IV hydration almost daily. Feeling much better now. I almost gave up too & cried and told DH I can’t take this anymore. Onc is working on a new plan now skipping the last carbo combo and moving on to AC. I really hate this. My near eye sight is shot, lingering nausea just sucks. Constipation is the pits. Feeling better this week thankfully but wow this is no joke as we all know. You hang in there, we will keep going! thanks Mara for encouraging us. Interesting that AC was easier for you. So sorry to the newly diagnosed friends here. It’s hell but you can do it. I can’t wait to have all of us on the other side of chemo. Hang in there everyone
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Mamacure--oh my goodness, you poor thing. That sounds just horrible and I'm glad your MO is changing it up so maybe you won't have to suffer so much. I feel a little better about handling AC now; the terror of the "first" infusion is behind me and I know what to expect next time. My SE's lasted for 8 solid days and after that I feel pretty much OK. I still get short of breath and my eyesight is messed up, but I don't feel as physically ill.
I think one of the absolute hardest things about chemo is how the tastebuds get messed up so that everything tastes HORRIBLE. If we could only drink water and have it taste like WATER, it wouldn't be so hard.
I hope everyone is doing well. Bless us all that we may come out on the good side of this nightmare.
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LW422, one thing that helped me when eating were non spicy but high protein meals and using plastic utensils to minimize taste issues. Chicken is usually pretty good, rice as well. Don't eat favourite things or they may turn you off later.
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Hey Mara. Thanks! My taste buds are "almost" back to normal so I've been eating OK for the past few days. I just ordered some lemon drops and other hard candies from Amazon; I think having one of those in my mouth might help me drink water after my next AC infusion.
Mamacure--I hope you are feeling better this week. When is your next infusion? My eyesight is shot, too. So annoying. Thankfully, I have not had any constipation, but a bit of "loose" if you know what I mean. No diarrhea, thankfully.
I hope everyone is doing well. I'm not sure how many of you are in active treatment, but hang in there. We are going to ditch this stupid cancer and leave it in the dust.
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I am glad to hear that the taste buds are feeling better, that helps a ton. Forgot about the hard candies, that's what I used to use too. Was a long time ago.
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Thanks LW422, glad to hear you are feeling better and able to eat. Lemon candy is a great idea. Hope your next AC goes smoothly.
I am feeling much better this week, going for Abraxane tomorrow, should be fine.
What's helped my nausea at times are pistachios, wasabi peas, mint gum, potato chips (!). My natural onc recommeded bone broth when I can't drink and in general. He also said since Carbo is wicked, I may do "ok" with AC, I hope so, I will get more fatigued though he said. I don't want to smell that port flush or the hospital smell anymore. My nurse said she hates the hospital smell too. I got peppermint essential oil at the ready and using ear plugs as nose plugs during the flush. Nurse said I will get Neustela Shot for each AC. Ugh. So far no bone pain with Claritin.
Positives lately:
No bone pain
Feeling better
No mouth sores
Nails doing ok
better appetite
always feeling good after walking (helps w/ constipation too)
new half head wig to wear with hat (very comfy and presentable) - feel better going out in it
Negatives:
nausea after treatment (will try zofran next)
spiky ugly bald hair (not bad)
sore head
fatigue when walking
house going to hell, need to clean LOL
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saying hello to al
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Dear Lori ,
How are you? I have not been able to come here as I am home with my 6 year old. Always thinking about you.
Regards
Flor
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On a plane ride a couple of weeks ago, I noticed the woman sitting next to me was wearing a pretty patterned compression sleeve. I used to wear one too, I told her, but over the years my lymphedema improved. She asked what kind of cancer I had, and how long ago. When I told her I had IBC and was almost ten years out from diagnosis, she burst into tears. She was barely a year from diagnosis of her own Stage III IBC, and with the rarity of this particular brand of cancer, had never heard or met anyone who had survived this long with no recurrence. She was the mom of two school-age kids, and didn't have much hope that she'd live to see them grow up.
I told her there are a lot of us out here! And the fact that she was seated next to me on a three-hour flight...with God there are no coincidences.
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sbelizabeth, I am so glad you could be there for the other passenger, a year out is definitely still enough to be overwhelmingly scary for people and hearing about long term survivors of this is definitely encouraging for patients.
I have IBC as well and am Stage IV but I figure that given the fact it was in my brain from the start, just too small to see in 2015, I have done well myself. My MO says that fast growing cancers respond well to chemo since I have NED in my body and brain at this point. Treatment is definitely better than it was before.
I am glad to see your cancer has not returned after all this time and that you lymphadema has improved as well.. All the best to you.
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SBElizabeth--I'm not a religious person, but you were certainly put in that woman's path for a reason. Kind of like my dental hygienist when I was first diagnosed; she gave me such comfort and hope. Then all the survivors on this board... it's a great help to so many of us.
It's nice to see some posts on this thread; I have often wished that people would return and let us know how they are doing.
Hi, Mara! So glad to hear that you are NED.
I'm having AC#3 tomorrow so only one more to go after that. My mastectomy is scheduled for August 23 so things are movin' along for me. I've had a rapid heart rate since dealing with AC and I hope that will resolve when I'm done with chemo.
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LW422, my heart rate was elevated as well when I was on AC. It did resolve once I was off the treatment and steroids during chemo. Mind you, I found AC easier to tolerate, my guess is due to the steroids the day before, day of and day after chemo. Only felt crappy for one day out of the 3 weeks.
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Wow, you were lucky with AC, Mara. It knocks me on my butt for 2 solid weeks, and I still feel "off" for the 3rd week. I hope I can hang in there and finish the last 2 so I can say I did all I could to kill this horror. July is going to be my toughest month yet I fear.
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You can do this and on the last chemo you just ring the hell out of the bell. If you have radiation after the mastectomy, do the same thing. I had radiation 3 times. Once for my breast wall 25 times, once for my initial tumour after my brain surgery in 2016 and once in 2018. Each one of those times I hit the gong and loud.
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Did anyone have a reduction in dosage for AC? My MO reduced mine from "60/600" to "50/500" due to my severe SEs. Now I'm wondering if that reduction will mean that I'm not going to get as good an outcome from chemo.
I suppose I should consider that some people can't complete the AC treatment at all, and I'm hoping that this won't make a significant difference. My MO didn't seem to think it would affect the outcome but I still have to wonder. (So when complete I will have had two full doses and two reduced dosage treatments.)My last chemo treatment is July 29, and my mastectomy (right) is scheduled for August 23. During surgery I will have the microsurgical procedure, a lymphovenous bypass to hopefully help avoid lymphedema. I'm also having a PS handle the closure for an "aesthetic flat" since I'm not having reconstruction.
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