IBC lounge: roll call, support and just a good place to hang out
Comments
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That's an amazing list sbelizabeth, thanks for sharing. I've created a version for non-believers.
1. Allow yourself to complain of nothing – not even the weather.
2. Never picture yourself to yourself – under any circumstances in which you are not.
3. Never compare your own lot with that of another.
4. Never allow yourself to dwell on the wish that this or that had been, or were, otherwise that is was, or is.
5. Never dwell on the morrow. Remember that it is not predictable. The heaviest part of sorrow is often to look forward to it.
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Yours works too, Traveltext! The original version was credited to a Puritan author from a couple of centuries ago, hence the somewhat Kingeth Jameth language.
Lori, just...be what you need to be. No excuses needed here. Great advice to look for a reason for gratitude. Sometimes in my go-to-work-come-home-rinse-repeat cycle I neglect that myself.
Amarantha, like Valstim, we are holding your hand. SB
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Hello everyone! I have not posted in this forum in a long while. I finished my IBC treatment in 2016 and had a complete response to chemo and clean margins following mastectomy. I had DIEP reconstruction and had returned to work. In August on 2017 I was diagnosed stage IV with bone mets (spine and femur) and brain mets. I must say that my original IBC diagnosis took a greater emotional tole on me than my mets have. I would cry at night in bed and was so scared. Now I really don't think about my cancer too much. Maybe it is just wisdom I gained going through my initial treatment that I am stronger than I ever thought I was. Now I just take life day by day and am trying to enjoy every day I am given. I don't think about dying, but have accepted that it will probably happen sooner rather than later. I feel good. The drugs that I am on are not as hard on my body as chemo was. I am 58 years old and am living my retirement now rather than later. We recently bought a condo in Traverse City Michigan (always a dream of mine) and ride my electric bike (trike!) up to the beautiful bay and thank God for the beauty in the days I have. Hang in there everyone. We never know what path our life will take, but there is beauty along every path.
Joy
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Welcome to this group rosiegirl. You've certainly had a roller coaster ride in the past few years, and I'm impressed by your attitude to the reality of your current situation. And glad that you have reorganised your life into an early retirement phase so that you can get on with doing the things that you want to do. Keep up that positive attitude!
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Fran, Happy Birthday! You wrote eloquently what we are all thinking and how we all feel, thank you. I know how busy is around the last school days, soon you can enjoy your vacation.
Traveltext, that's wonderful news! What a great opportunity. Of course we want to hear how it goes.
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Amarantha and Bobby, how are you doing? Have you started chemo? Bobby, never feel sorry for your decisions. It's your body and your health.
sbelizabeth, beautiful words to live by. I sometimes forget it.
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Dear Rosiesgirl, I am terribly sorry about your recurrence, and it sounds like you've been through a hell of a lot. Your philosophy for life is similar to mine, and I thank you for putting it into words so beautifully.
Moreshoes, I begin the Cisplatin on Monday with a 24 hour hospital stay, but today was my first radiation. I went to the pharmacy yesterday and came home with a huge box of every imaginable thing for the three days a week I will have home intravenous injections including that octopus-footed thing to hang the medications from. So now I'm all ready, the home nurses are all ready, the pharmacy is all ready, the radiation lab is all set up !
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Moreshoes, welcome back. You are the shining light of the TN brigade, and it's always good to have you check in.
Amarantha, pleased to hear that radiation has begun and that you are on a countdown to chemo on Monday.
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Amarantha, it's chemo eve--tomorrow is the big day, when the cancer-killing magic is released to do its work! We're here as your cheering section. As Traveltext would say, we're "chuffed" that your plan is in place and things are moving forward.
MoreShoes, it's good to see you here, and Rosiesgirl, welcome back. "There is beauty along every path." Yes indeed.
Lori, how are you? Whenever, and whatever you feel like posting, we're here to listen. SB
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SB thanks for asking about me.
Had a breast MRI two weeks ago, even though my MO doesn't think it will tell us anything because of the extensive scarring. I got angry when he said it doesn't "look" like cancer and I had to remind him that it didn't "look" like cancer the first time either, but the skin on my breast over the primary tumor is red, irritated, flaky/peeling, hurts like h*ll and has been getting worse for two months now until I finally mentioned it to him at my last consult. After having my tumor ulcerate once already, of course I'm worried about what's going on. He reminded me 3x that more chemo won't extend my life, it will only make me sick and miserable. The thing about palliative care is that you don't do any treatment that is worse than the current symptoms. I'm currently doing okay, the pain level is bearable and I'm even off all of my prescription pain meds for now (morphine, fentanyl, gabapentin), it stings like a b*tch but I can deal with it. I'm able to be active, I have full mobility, you wouldn't even know that I have terminal cancer if you saw me on the street (except for my funky hair & chronic fatigue) and I'm in much better shape than many other Stage IV patients I meet in my support group, so I just need to take full advantage of that while I still can. I'm just disappointed that it seems like I only got two months progression-free after chemo, and that I may be one of the rare ones who don't respond to H&P (which was hoped to actually extend my life). I'm really grateful that I've had a few months of feeling okay because it was a long hard fight to get here, I'm just really bummed after having such a good response to Taxol, I had hoped for an equally good response to H&P. I guess part of me is also afraid that it's going to be as fast as the last time - one minute I'm perfectly fine and the next minute I'm in the hospital fighting for my life. But I guess that's better than a long slow decline anyway.
Truthfully I haven't had a decent night's sleep in two months and it's making me cranky - partly due to anxiety I'm sure, and partly due to brutal pain in my hips, knees and feet at night, I've tried everything OTC I can think of - melatonin, MMJ, lavender EO - nothing seems to help. I don't want to start a prescription sleep aid because I'm finally rid of the chemo brain and opioid fog and I'm enjoying having a completely clear head for a change. Hoping that after my consult this week, maybe things will settle down in my head. I just don't know if it makes sense to stay on H&P if it's not working. The SEs aren't fun, but I'm willing to deal with them as long as I know that there's a point to it.
Didn't even bother scheduling a follow-up to the MRI, will discuss results at my regular consult this week. Just focusing on planning a long-overdue and much-needed vacation for both of us now that I'm up to it, enjoying the first fruits of my tiny garden, enjoyed a beautiful walk on the beach with my honey yesterday followed with some amazing fish tacos for dinner. Nature has always been very healing for me and I used to spend much of my time out in the wild, so I'm really looking forward to our upcoming vacation. A bit more tame than my usual style but had to make some adjustments to account for my health.
Hope you are all doing well!
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Dear LoriCA, I'm disappointed that your ontologist is not looking for more solutions, including different diagnostic solutions. (PET scans ? new biospies ?) - and different kinds of chemo (Halaven) ? etc. Does being HER2 + mean you are ineligible for Ibrance ? Sounds like a new oncological team is in order. Possible ?
Thank you everyone for stupendous moral support. I'm returned from my first 24 hour hospital stay for Cisplatin, they gave me much more anti-nausea meds then I've ever had all at once, and I still had some nausea, but not too much. I slept most of the day today, heavy and deep like an underwater rock. It's such a beautiful day, and I am happy to be home, and was overjoyed to see my husband (after such a short separation !).
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TT thank you for your kind words.
Lori, I'm really sorry. Enjoy your time in nature.
sbelizabeth, I haven't contacted you about the hyberbaric oxygene therapy cause there're problems.
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The words you don't want to hear. I had pain in the chest area and the surgeon agreed for me to have a scan. Today I heard that they found four suspicious spots in the lungs. Due to my history, they assume it's cancer. I'm numb. I actually went to work right after I heard the diagnosis. It's surreal, I can't believe it. They're sceduling an appointment with the oncologist. Do you have any information, links that I can read and be prepared?
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Moreshoes, I don't have links, i'm sure others will chime in. I'm here to let you know i'm reaching out with my hand and heart to you.
Val
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Oh, MoreShoes...I'm sorry. What a blow. I can only imagine the haze of shock and grief, and you went to work? We're all different, of course, but such news is better processed by diving into bed with a box of kleenex and an ativan.
At the same time, I know it looks suspicious, but I've read many posts from women who had suspicious nodules in the lungs that didn't turn out to be malignant.
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LoriCA, keep us posted on this saga. I hope the sleep improves and that your long-awaited break is a welcome distraction from all the trauma associated with this crappy disease.
MoreShoes, what a blow after your long run. This site has lots of discussion on this topic, but here's a long thread:https://community.breastcancer.org/forum/8/topics/...
Many people here have dealt with lung mets using radiation and the new chemo drugs. Ten years ago the situation was different, but you have a potentially much better prognosis today.
Best wishes to you both.0 -
Went for my consult and infusion today. They believe that the MRI shows what's going on is signs of healing, particularly in the scarring of the lymph nodes and the type of reaction that can cause. It's weird because my skin was unblemished after the ulceration finally healed and then started getting funky again a couple months later, but it hasn't gotten any worse in the past couple weeks, so I'm okay with continuing to monitor for now. Like I said before, it stings like a b*tch but I can deal with it, and it's still flaking and peeling but it doesn't look like it's going to ulcerate again, which it would by now it were same as last time. There are other signs that the H&P is working so we're going to stick with it for now. They still think that surgery would do more harm than good and don't recommend it. I'm good with all that, I really am doing well compared to most of my other Stage IV friends, besides the skin irritation over the tumor site. I'm just going to take a deep breath and enjoy the fact that I actually feel pretty good right now, all things considered. The flare up at the tumor site just put me into panic mode because I went downhill so quickly the first time.
Moreshoes I'm so sorry to hear that, sending lots of love and hugs over to you. I see that you are TN and that your mets are in a different organ than any of mine, so your treatment etc. would be completely different than anything in my knowledge base. Most of the threads in the Stage IV section here are basically broken down by what treatment each person is currently doing, and the location of their mets. There is a wealth of information in those threads and worth spending some time once you know your treatment plan. Give yourself plenty of time to wrap your head around the dx, it took me a few months to get over the shock and feel like I was back in control of my life again. You might want to request a copy of the comprehensive MBC guide that Bestbird put together, it's pinned at the top of the Stage IV section - https://community.breastcancer.org/forum/8/topics/... It covers just about anything you would want to know about MBC treatment,
amarantha good to see you back home and checking in, but sorry to hear about the problems with nausea.
Glad to see you are enjoying a beautiful day. I won't hesitate to get another opinion if I ever lose faith, but I had the talk with my team right up front about what course my treatment would take and sometimes it's me who needs to remember the goals. If I were oligometastatic I might feel differently, but because of the extent of my cancer and my prognosis we agreed that I would not spend what's left of my life chasing every possible treatment alternative. I know that's the right thing for some people, but for me my treatment will always be focused on quality of life. My doctor has promised to keep me feeling as good as possible for as long as possible and so far he's done a great job. I told him up front that if he thinks I only have one year to live, I don't want to spend most of it sick and miserable from treatment that doesn't extend my life anyway. But as soon as I have any real pain or anything that inhibits my quality of life, he has always jumped right on it. Hope your treatment continues to go well for you!0 -
Amarantha, nearly missed you amongst all the posts. So pleased to hear you have completed your first Cisplatin. Where do they find the names for these drugs! Sorry about the nausea. You need to teach LoriCA how to sleep "heavy and deep like an underwater rock.". When's the next treatment?
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Yeah no kidding Traveltext! Funny thing is, I did sleep like that up until recently but I think it was due to the morphine and fentanyl. Once I stopped both of them, sleep started eluding me. I always had problems with insomnia in the past, I just feel it more these days. Potassium supplements haven't been helping with the foot/leg cramps so I'm adding magnesium too, although my MO warned that it will cause diarrhea, on top of what I already have with Perjeta. My nurse said that tonic water with quinine helped her, so I picked up some of that too. I just may need to add a touch of gin or vodka because that is my favorite summer drink and I haven't had a drink since my dx.
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LoriCA, it has been one of my minor life goals, to discover what causes nocturnal leg cramps and figure out how to prevent them. Alas, the goal remains unachieved. I know that for my own physiology, I'm more prone to leg cramps if I cycle hard on a hot day or if I'm cutting back on carbs. I've tried boosting potassium and magnesium, without success.
BUT...and you're going to snort...there's scientific evidence that a couple of gulps of dill pickle juice, taken during a persistent cramp, will shorten the duration. It's not the sodium, which would take too long to get into the circulation after oral ingestion. They're theorizing it has something to do with the jolt of the vinegar against the nerves in the back of the throat.
I've tried it myself, and now I keep a small jar of pickle juice next to my bed at night. Instead of leaping up and dancing around, cursing like a sailor, I chug a swig of it. It seems to help. Call me crazy.
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Pickle juice? Haha I never heard that one but will give it a try. Cutting carbs is probably what's causing it, I'm trying to get my diet back on track after several months of eating to gain weight per doctor's orders. Last week I was even getting cramps in my ribs.
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Yes LoriCA cutting carbs surely did that to me, as it lets so much water go, - I went through this and kept sucking on salt to compensate. I'm interested to hear how else you feel on this diet, it is the only one that ever worked for me, but I sort of fell. off. the. wagon.
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amarantha I've been low-carb low-sugar for most of 14 years now, with a few relapses along the way. My body absolutely loves eating that way, I was amazed that in my 40s I looked and felt a million times better than I did in my 30s. I had slacked off the year before my DX and I often wonder if that played a role in how it all went down. My father is diabetic and I am pre-diabetic, so eating that way also kept my blood sugar in line. But when I was DXed my doctor told my family to feed me as much cake, cookies, ice cream, pasta, rice, etc. as I could eat because he wanted me to gain some weight. I eventually gained more weight than I'm comfortable with, my blood sugar has been over max for 6 months now, and I'm sure it is contributing to my fatigue and irritability. Breaking the sugar cravings is tough because I have a wicked sweet tooth! In addition to the cramps I get wicked headaches until my body settles in to the new diet, and I have to make sure to eat every few hours to keep my blood sugar from crashing. It usually takes me about a month or so to adjust to it again, and as soon as my body adjusts even the smallest amount of carbs/sugar/junk food makes me feel sluggish and sick. Just having a hard time getting there right now, I'll be good all day and then give in to the sugar craving after dinner. I do know how to make some "desserts" that fit into the diet and curb the craving for sweets, I've just have been lazy. I hate to even call it a diet, to me it really just means that my meals mainly consist of protein and lots of fresh veggies, just good natural foods. I don't do it to lose weight because I'm not overweight, although when I first started 14 years ago I did lose a lot of weight (I was down to a size 2 or 0 for a while until I decided that was too thin), I like to eat that way because it makes my body happy and feel healthy, it makes a huge difference in how I feel.
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Wow LoriCA, I must admit I sometimes wonder if going gradually back to carbs is what brought my cancer back. But then again, it came back pretty much right on schedule. Thank you for telling your low carb story. Down to a size 2 or 0, I'm so jealous, I lost a lot on the low-carb protocal right after I finished the treatment for my first bout of IBC in may 2014 I went very enthusiastically on the low carb diet and dropped pretty effortlessly from 230 to about 170 or so, but my dress size hardly changed a whit. I have broad shoulders and wide ribs, so basically I stayed the same size 18 ! grrrr. Anyhow I've really started eating more silly things, partly because I think, what the hell, let me at least enjoy food, and partly maybe because of the corticoids and stuff that make me crave food. During the recent onslaught of various types of chemo, I have steady gained, though thank goodness not all the way back to where I started. AT least not yet. Well, the most important thing is to feel good, isn't it. Today I feel almost great, though I do realise it is thanks to a major chemical cocktail of Zophren, Emend, corticoids, and Métopimazine (a new thing they gave me I never heard of before).
Traveltext, you are darling to keep up the conversation - well next treatment will be this Tuesday. Cisplatin shall be each Tuesday from now on. And the radiation is every week day. Now I have four free days without a needle with a tube attached to it sticking out of my chest, and I guess I can even go swimming !
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Amarantha, it sounds like you're holding up well beneath the onslaught of drugs and radiation! Yay! When I was doing taxotere-adriamycin-cyclophosphamide chemo, they gave me lots of anti-nausea drugs including Zofran and Emend, and I wasn't ever nauseated. CONSTIPATED, yes, but not nauseated.
Thanks for sharing your own carb story. It sounds like my anatomy is similar to yours; broad shoulders and build substantially. When I worked labor & delivery a few million years ago, my big hands and long fingers came in handy--I could reach any baby's head with ease, without making the mom uncomfortable! I do wonder if my excess weight contributed to breast cancer, although I know that with my genetics, love of cycling, and body type, keeping my weight in the middle of the "normal weight" BMI would be impossible without limiting my calorie intake to about 500/day. I'm just not willing to live every day being constantly hungry. I was heavier than what's considered " normal" when I graduated high school, and I was pretty fit and lean then.
Enjoy your four free days! Go swimming. Eat pizza. Savor each moment. SB
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amarantha I'm glad you are adjusting ok to your new treatment. sbelizabeth, i had a similar experience with chemo. The anti-nausea meds did their job. No bowel issue either. For me it was rads that really kicked my butt so to speak. I burned terribly and had a stroke soon after finishing.
weighing in on the 'carb' discussion. Prior to this latest bc dx in 2015, i had steadily kept my weight within normal range for 30 plus years. Menopause in my late 40's was a challenge and I had a stubborn 10 pounds i would lose after sticking to a high protein low carb regimen. And guess what? I still got bc for a second time.
I personally know of women who never had weight issues, ate sensibly, worked out ( i belonged to a running club). we ran marathons all over the southeast. More than a few have had bc and recurrence. So I don't know. My sister smoked, never worked out, ate what she wanted, no bc. she is 64. Oh is overweight now. Go figure.
I now have a stubborn 20 pounds that won't go away since treatment. Do i worry a lot about it? not anymore. I stay as active as possible, eat right, hydrate, but most of all enjoy life. If that means a dessert and piece of bread here and there, so be it. Each has his own outlook. Eating sensibly, working out, make me feel better, but will it stave off a reccurence? I don't think so. Just my opinion.
Val
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I have the opposite problem, I have a petite frame and 5 pounds can be an entire dress size on me! That makes it fairly easy to drop a size, but also makes it way too easy to go up a size or two and I keep a range of sizes in my closet. I eventually settled in long term to where my BMI was right in range (even through menopause) and most importantly I felt great. My doctor wanted me to gain 10 pounds for the fight, and I was okay with that, took me 5 months to gain 10 pounds because, well, chemo. After chemo I decided that life was too short to go without homemade bread and I started baking almost every day. When the extra 10 pounds became 12, 13,14 pounds (and all of my excess weight goes straight to my middle, wouldn't be so bad if it was better distributed haha) and everything in my closet was too tight, I felt it was time to get back on track. I can have things like that once in a while, but I can't pig out on bread and ice cream every day.
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Hi, I haven't been on the boards for awhile. I periodically come back. Thats all my head can handle lol.
amarantha, have to say ur job sounds amazing! Anyways, I had to say something about IBC and surgery.
To cut a long story short:
I originally had IDC in right side but it was also in my skin/nipple but did not present itself as IBC. After a double mastectomy a red large spot showed up in my left side that everyone didn't think anything of. After a year a petscan showed progression to lymph nodes on the left side but no tumor. So they biopsied the red spot. It came back + and then the redness just got mad and grew and grew and grew.
I pushed for radiation which I got. All my left side was red. Rads killed the redness and lymph nodes. Petscan cleared me. All was great. Then stupid me decided to have another biopsy on this hard nodule under my left breast. It came back -ve but the BC got mad again and started getting red all over again.
It's being kept in check, but all this to say that if I hadn't cut anything for biopsies, the redness wouldn't have flared up. So now I'm basically stuck with tissue expanders inside as boobs because surgery would prob make it infinitely worse. I don't want anyone to cut me. If I hadn't had a double mastectomy the red on the right side probably would have never showed up because the original right side is all good to this day. If I hadn't had a biopsy, again I would still be all good.
Have u thought of electro chemotherapy?? That's for skins mets that doesn't show up anywhere else in body. I know they do it in Europe. I would love to have that.Not sure why the font changed...
Anyways, someone mentioned sleeping. I HAVE to take a quarter pill of Imovane or I can't sleep. Only a quarter pill but that does it. I don't care anymore if I'm taking more drugs but if it makes me sleep, I'm all for it.
DD
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Well my friends, it's not good. I talked to the ocologist today. The suspicious spots in the lungs is cancer. They were not there in the scan of 2016. It's not curable, they're not going to treat it with more chemo just palliative care when it's needed.
I'm crying and I'm numb. They'll ask the hospital in Amsterdam for experimental drugs (don't mean funny drugs...although...by now, why not).
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Hugs Moreshoes, I'm so sorry to hear that. I know how devastating it is when you first hear. Give yourself some time to come to terms with the DX, and please don't think that it's automatically the end of the road. Palliative treatment is designed to keep you feeling as good as possible for as long as possible, since it's not possible to "cure", you only go through miserable treatments when the symptoms get out of hand to kick the cancer back into line, and in between you feel really good. My treatment is strictly palliative and I honestly feel a million times better now than I did when I was first DXd (despite my complaints and occasional meltdowns). I'm so grateful to be able to live whatever is left of my life feeling good and happy for as long as possible. I guess my point is, being in palliative treatment (as opposed to curative treatment) doesn't mean it's over and it doesn't automatically mean that you will go steadily downhill. Not at all.
There is a lot of heavy focus on TN targeted therapies right now. We're all keeping our fingers crossed that they come up with something soon for TNBC that is as successful as H&P has been for those of us who are HER2+. Hopefully you can try one of the trial drugs/combos that have promise.
I understand what you're going through, and am always happy to talk or just listen. Feel free to message me any time.
dancingdiva I had never heard of eletrochemotherapy before, interesting to see that it is used as palliative treatment for skin mets, especially if ulcerated. Something for me to keep in mind for discussion with my MO if this turns out to be more than just symptoms of healing. Thank you!
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