August 2015 Chemo Group
Comments
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Morning all,
Re diet, I was only told a normal diet, follow the Canada healthy eating food guide, and just the same regular warnings we get about ensuring you wash all of your fruits and veg before eating to clean of pesticides and fertilizer residue. Nothing about no sushi. I've enjoyed sushi for years and had it twice during the past round. I didn't even think about it until it was mentioned here. I didn't have any troubles. I did have mild heartburn through the night after day one but I'm sure it was because I had shrimp pasta with tomatoe sauce, I should have known better with the tomatoe sauce, too acidic.
Re: stubble on the head, I've got lots as you can see from the picture, but the only issue I'm having is if I don't sleep with a cap on my head sticks to my pillow
. I've seen a few escapees in my caps when I take them off, and I just shake them out. Today is day 3 and I slept pretty well last night. Only up once to the washroom, and then up for regular nausea meds at 08:00. Feeling rather blech today, but this was the same as last time. Saliva glands working overtime, nothing tastes right so I'm on to mild peppermint chewing gum and wild cherry lifesavers.
RavenSally, thinking of you today. Hoping you are feeling better.
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Michelle, I've been the same way. Too cold with nothing on my head, but too hot with a hat. I've been wearing an old cotton bandana on my head around the house, and it's a good solution. I have all these great hats (mostly ones people have given me), and I'm wearing a ratty old bandana. Go figure.
General update: this round seems less crappy than the first. Basically the same SEs, but knowing what to expect--and how to manage them when they occur--has made it less difficult, at least psychologically. Overall, my biggest complaints are intestinal distress (the understatement of the decade), feeling hungover for the first week after treatment, and a vague sense of doom that seems to descend on day three and then lifts after about day five. I continue to let my sense of humor reign, which helps. I've also never been much of a pill-taker, but I'll say this, too: Ativan (.5 mg, only at bedtime) has really, really helped with the steroid-induced sleeplessness and middle-of-the-night mind racing.
I used to joke about the tidal wave of drug side effects. Take the thing, and then take another thing for the thing the first one caused, ad infinitum. Now I sort of get it. Detoxing in January--from chemo and its accompanying SE-managers--is going to be interesting.
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Eating on chemo:
Royal Marsden Cancer Cookbook: http://www.amazon.com/The-Royal-Marsden-Cancer-Coo...
Awesome recipes, developed jointly by chefs and cancer specialists!
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RavenSally, has your medical team talked about giving you the Neulasta shot, or Neupogen shots? If low white blood counts are main issue, then there are ways to help avoid that SE.
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The only directive I have about diet was: No Sushi, Wash veggie & fruit REALLY well, even it's already triple washed. No need to be organic, but MUST EAT. DO NOT lose weight (within 10lb range is ok).
Had blood drawn this morning. looking good. round 3 of TC tomorrow. after that, just 1 more!
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I just got a text from a woman I used to work with. She said she heard my terrible news (cancer I guess!). She asked if I needed anything...
I'm not sure of how I feel about these types of communications. Clearly I didn't tell you I had cancer. I know we have friends in common and yes I did tell two people that now probably one or both have told you. We would have lunch maybe twice a year. She really is a sweet woman.
It's not a secret, but I'm not shouting it from the rooftops either.
I wrote back and said I'm going through chemo and being cared for really well and that I'm keeping the news close.
I dunno.
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Detoxing? From Chemo? Hadn't even crossed my mind! Oh dear...
I was told to avoid plant estrogens in my diet. Cut out soy, flaxseed, wild yams, etc. Otherwise wash, wash, wash, fruits and veggies. And do not cut calores. That one makes me laugh! Nothing is appetizing! We aren't supposed to lose weight, but my MO knew about my eating issues and this was expected for me. I am suppsed to continue seeing my nutritionist, but I honestly haven't had it in me to make ANOTHER doctor's appointment in the past six weeks. I have lost about 11 pounds but it seems to be during week 1 and then I even out for weeks 2 and 3. By the end of cycle 6 I may be down to the goal weight she set for me--not how she wanted me to get there and I will have to rebuild muscle lost...
My therapist recommended a cookbook called Crazy, Sexy Cancer (I think--something like that).
Michelle, I wanted to tell only certain people, but my mother and mother-in-law shared the news with a whole bunch of outsiders. I had created a FB page to update friends and family in one place and had to make it so I approve of anyone added--not just letting friends add anyone. I've also had to delete some of mom's too personal updates--discussing SE with you ladies is one thing, posting it on FB is another!0 -
Hi everyone. I had to take a few days away from here because I hit the emotional rock bottom Friday night. Slept maybe 2 hours, but I am making up for it today. I think that the week with headaches and rip roaring ear ringing is what did it. Not sure. MO is not sure about what is causing them so he is sending me to get an MRI done of my head. So on Wed, I will have my liver and my head done and hopefully my friend can take a half day off, so I can take 2 ativan.
For the those having issues getting the Neulasta the following day. Check to see if you can get the on the body injector. It is cool. They put it on the day of tx, either back of arm or belly and then about 26 hours later (has a timer in it) it will dispense the med. Take it off when it is done and you are good to go. My infusion center is trying with me this week. Pharmacy was concerned about reimbursement, but the drug rep said most companies, including Medicare reimburse for it and if the insurance company doesn't the drug company has a program where they will pay for it so the patient can get it. Have your nurse navigator check into it. Not sure how it would work for our Canadian friends, but definitely worth looking into.
I got the warning for no buffets, potlucks and salad bars. I could eat all the fruit and veggies I want as long as I prepared them at home. I don't remember anything about fish, but then again, I am not a big seafood eater. See Food, yes, seafood no.
Well, better try to get something accomplished today, since it is chemo week (Thursday). Want to try and be a little ahead of the game this week, since Tues and Wed are filled with doctor's appts and scans. Oh joy!!!
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I guess I should have fully read everyone's posts before writing.
@Michelle, I think your response was good and thoughtful.
@Muso, I don't have a FB for it, thank goodness, but I did have to stress to my grandma not to go telling the whole family because if I didn't, she would have. She was upset with me anyway because I didn't tell her as soon as I knew. My mom had to tell her that she didn't get told right away either, but of course mom was a lot sooner than grandma. Unfortunately, my mom's side of the family is the older generation and it seems that all they talk about is theirs' and everyones elses medical issues. Drives me nuttier than what I am. I am like Michelle, a few friends and family know, but I am not getting on a rooftop to shout it to everyone.
Okay, now I need to accomplish something.
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michelle- There is a thread on this site called Stupid Comments, or something like that. It's a big eye roll of comments that we all have received, and I must add that it is quite humerus to read how people set up the stories. I, too, am not keeping this cancer a secret, but as a former health educator, there is a little part of me that doesn't want my former students to know because I don't want them to give up or pity me. While you are not shouting it from the roof tops, I find myself not going places where I might see people I know... It's weird, but we can't deny our feelings.
MsBrompton and Musogirl - Is the Royal Marsden cancer cookbook current enough that it talks about mushrooms as an anti cancer food? I 'm always looking for a good cookbook, but I noticed this one was a 2004 copyright. Current enough? I also looked up the Crazy, Sexy Cancer diet. The lady is interesting and the reviews say the food is good, but I wanted to focus on Breast cancer. I have other non-cancer healthy cookbooks --I just bought one called "Meatless"--and I like it because it's for people who do (and don't) eat meat. I also bought the Anti Breast Cancer Cookbook by dr julia greer. I don't think diet alone is going to fight my cancer --hence, the chemo-- but I'm trying to do what I can to prevent recurrence.
On another note, I'm starting to get nervous about chemo session #2... I think I'm even starting to imagine tingling in my fingers and toes because after I'm not thinking about it and check my fingers/toes, they are not tingling. Anyone else have this?
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thank you for all the feedback on the food. It is strange that each MO advises their patient differently. My MO is very strict, it is depressing sometime. I eat quite healthy, but her instruction is to avoid seafood, fried food, all raw. food (understandable), all berries and all fruit without skin, and limited red meat, sweets, many more. It is depressing sometime to be allowed to eat limited variety of food. I know that she also mentions soy has estrogen content, so i have not been eating soy products since my diagnosis. It was my favorite food. *sigh*
Michelle: i completely understand your situation. I only let a handful amount of people know about my BC. Mostly because I dont want to explain to them each time I encounter them. IAm not in the mood of discussing it when I am still under chemo SE.
Sloan: You should consider L glutamine powder, twice a day, 15 gr each, so total of 30 gr per day. I have started to take it when I started chemo, so far I have completed 2 cycle pf TCH, so far so good.
I will have my 3rd cycle on thursday same as you.
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Ooh I look forward to reading the stupid comments Sloane15!
Tazbear sorry to hear that you are experiencing such side effects. Sounds horrible, but hopefully your caregivers can sort it out soon. Man, I have Ativan. I really should try one. I'm not sure why I am hesitant to.
The body injector sounds interesting. I'm glad my H doesn't mind jabbing me in the sub cue every night!
I also find it really hard to take it easy. I feel like I need to accomplish stuff or see what my boys and husband are doing and try to help out. I really should just rest a bit more (especially as I do feel tired).
In general at least my current state got me out of my sister in laws bridal shower today. Yes. Sister in law. My brother eloped in April and now there is a shower and two big receptions coming up...(don't get me started!). Apparently my sister in law was over an hour late to her own shower. So at least I missed that awkward gathering.
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Alice12 -- I started taking L-glutamine on day 3 during my first session. I was told 10g 3x a day for days 1-5 of chemo. Are you taking it everyday? I wonder why I was told only days 1-5. I'm also taking Turkey Tail, but no other vitamins or supplements. I eat pretty healthy, but this week during my pity party I ate junk and out in restaurants. But I'm back to being healthy again today.
Anyone's doc say no coffee? I think my MO was okay with it but the nutrition guy was not. Yes, the different things we are all told is odd!
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Good morning everyone!
@TazBear, I'm glad you're back. Sorry for the low point.
I managed to wake up feeling happy and healthy today. Not sure what factors helped, but for what it's worth, this is what I did when I went to sleep (and I was, actually, feeling a little ooky at the time, but that cleared up and in fact, I ended up staying up a bit late): I took a 12-hour clairitin, a tylenol, 1/2 of a hydrocodone, a compazine, a 10mg melatonin, and 24 ounces of water (yes, I had to get up several times before I went to sleep to go to the bathroom). I woke up with a teeny headache, but nothing like last week. I am going to try it again tonight and cross my fingers that maybe it isn't necessary to have a "bad day" every single week.
The other thing I did yesterday and today that I think is helping: qi gong. I'll write more about that in the complementary medicine section, because it's not exactly medical.
@KateB, gotta be a comedy. Midsummer Night's Chemo? Bathroom's Labours Lost? The Taming of the Spew? Ha!
Food-wise, I am eating whatever I feel like eating, and to be honest I haven't really been extra-washing my triple-washed lettuce or anything. I also ate sushi the night after my first chemo, but I remembered the caution about raw fish so I got a cooked one (California roll, with imitation crab and cooked shrimp on top). I meet with a nutritionist for the first time on Friday next week. I expect she will tell me to eat more veggies and fruit, because I just don't eat that much, especially fruit. Except for my favorite thing these days, smoothies with lots of berries. (BTW I read this morning that blueberries are supposed to be good for diarrhea. Haven't checked it out to see if that's backed up with any research but I thought that was interesting!)
As far as cookbooks go, I have one called "Eating Well Through Cancer". That sounds kind of weird now that I write it down without looking at the cookbook spine. I can't tell you a lot about it, because to be honest, I haven't cracked it open lately, but we got it more than a decade ago when my husband had cancer. (It had been slated for Goodwill a few months ago, but I changed my mind just in case the recipes in there were healthy. Good thing I did!)
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cassie: how was your experience going through 6 cycles of TCHP? was it almost the same for each cycle?
sloan: yes, i take L glutamine everyday. i mixed it with juice. I also take B complex which is approved by my MO.
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Stupid things people say:
1. My sister in law keeps asking me when I'm going to make my breast cancer "Facebook official". It's like it's not real to her until it's on Facebook. I've personally reached out to everyone I wanted to have hear it from me. Believe me, it's real enough.
2. A "friend" that we see at the pool all summer told me how lucky I am that now I can get "perky p@rn star boobs". Literally, the first thing out of her mouth when I told her my diagnosis. Um, no, actually my focus was more on my shortened life and leaving my children. And if she knew the first thing about me, that's so not my style. I'm so conservative and not into appearance. Or p@rn.
I've put my foot in my mouth plenty of times, but these comments are actually almost entertaining to watch. Human behavior is so stupid sometimes.
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Hello all, I'm back after a very long week, one which I hope to never repeat! I had my first infusion on Monday, 8/31. I felt queasy even as the AC was going in, queasier later and slipped steadily down to horribly nauseated on Day 2. Day 3 started with unbelievable diarrhea and the return of Nausea with a capital N. To sum it up, after two trips back to the cancer center on Tuesday and Wednesday for fluids, steroids, and meds, I ended up in an ambulance and in the ER, severely dehydrated, with uncontrolled nausea and diarrhea, so weak, I could barely move. In the doctor's office, before they called the ambulance, my MO gently (and funnily) said, "Every year we get one or two patients who react badly to the chemo, usually around day three or four. My dear, in thirty-seven years of practice, I can officially say you are the worst I've ever seen." I told him it was the most dubious honor I had ever been unfortunate enough to receive.
But my MO also knew when to admit defeat and I now have a specialist consulting on my case, who will prescribe meds to block the SEs before they start and is going to be there for the next round while I'm being infused. I think they were all worried because apparently (I have very little memory of this, DH told me later) I actually begged him to please kill me with a straight shot of potassium to the heart and he could use my port to do it. I really was ready to give up (DH and I even discussed it briefly), but we knew with TNBC, you don't have too many choices. And my MO was so upset that we even mentioned it, poor thing!
It's been five days and I'm just home today. Finally pulled together enough energy for the first time to get on the computer. I hope everyone else is doing well and weathering this better than I did. I never expected such a reaction, but I really should have seeing as I have so many other chronic illnesses. I am very nervous about round 2 on 9/14, but I keep telling myself to only think about getting through today. The consulting MO also said if there is a next time, no messing about - straight to the ER.
And I thought I was going to work through this? Quelle sottise! My hat is flying through the air for all of you who are handling this so well. You are amazing!!!
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alice12, it wasn't easy, but I got through it. In some ways, the 5th and 6th cycles were easier, and in other ways they were tougher. Neulasta SEs got much easier, and generally I knew better what to expect and was less anxious. I had terrible migraines the first four cycles, but those eased off. My MO figured out how to help me taper off the oral steroids which helped immensely with the after-steroids crash I'd go through each time. My legs got very fatigued, but I was still able to get out and walk through all 6 cycles. It now feels like SUCH a long time ago.
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Bunnybumps: thinking of you and happy to see you back posting here. What a scary ordeal you have had. So glad you have a specialist for your side effects and that it sounds like you are in good hands.
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Bunnybumps - Oh my gosh! So sorry your SE's were so bad, but grateful you are ok now. Sounds like you will be well cared for the next round.
Tazbear - I'm sorry to hear you had a rough time. I'm glad you are doing better and hope round 2 goes smoothly.
Raven - I'm thinking of you and hoping you MO can come up with a solution that will help. Take care!
Thanks everyone for all the MM info. I'm interested in trying it, but doubt if my MO will approve. He is very conservative and won't endorse anything without a clinical trial to back it up. He doesn't allow cold caps and frowns on ice chips for mouth sores. So even if he doesn't seriously disapprove, I'm sure I'll need to find a doctor that will sign off on it. I guess I'll have to put out some feelers to see if anyone knows a doctor.
I'm on day 10 after my first AC treatment and feeling really good. Things turned around for me on day 8. We went kayaking yesterday and plan to again tomorrow. So nice to get out and do something fun! My SE's were mostly minimal, although there were a lot of them. The worst by far was the heartburn. It was on a scale that I didn't know existed. I'm hoping the MO will suggest something stronger than Pepcid for the next round. The heartburn was the biggest impediment for me when it came to eating. I think I've lost about 4 pounds this round. I can definitely afford to loose some pounds, but that could really add up over time.
At the time I felt like the SE's weren't really that bad, but boy the dread is setting in for the next round. 1 down, 15 to go.
Hang in there, everyone!!!
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@Michelle ~ I like your response. I selected whom I tell & actually only my immediate family knows. but not the extend family. Selective people from church. a few at work besides the supervisors.
I update people thru facebook (set up a private message group) & emails. some I will write more, some people I just give basic updates, depend on how close they are to me.
alice12 ~ my MO said jury still out for the Soy, the body can use plant estrogen. just don't go crazy about it. eating tofu, edamame or soy milk occasionally is ok. (I don't think anyone would ONLY eat those)
Sloan15 ~ I am having round 3 TC tomorrow. No tingling. But for the past few days, I got fatigue sometimes, & it felt like I have lead shoes on. But it comes & go. & I am drinking coffee - they even give me coffee at the ER when I was admitted overnight for Low Sodium.
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Hi everyone.
I am new here. I had my first infusion 3 weeks ago. My next one is this Tuesday 9/8. The actual chemo was fine, but I spent the next week very sick and the week after moderately sick. By sick I mean body aches, a crushing headache and diarrhea. I've felt good for 5 days, and it's time to do it all over again. My doc said he was going to reduce my carboplatin and eliminate the Neulasta shot to see if it is better. I can't imagine how I would work like this.
I also have been pretty depressed; very weepy and feeling of hopelessness. Has anyone had any experience witn this? I am normally a positive person with a sunny disposition.
Everything I read here is so helpful. Thank you in advance for any insight/advice.
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bunnybumps- I am so sorry to hear about your horrible experience.
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Abart: welcome to the group. These women have made the last month or so so much more bearable for me and given me such support, reassurance, and a place to ask questions and vent about side effects. I didn't realize how much chemo would take out of me physically. It is completely understandable that your emotions are different from your "sunny disposition". It's hard to be up and positivewhen you are so exhausted and depleted from treatment. I would fully recommend that you ask your MO or another care provider for support whether it's medication or someone to talk to. And when you're weepy, someone is always here to give you a virtual hug. One of the beauties of this board is our diversity of geography and side effects, someone is always awake!
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@bunnybumps, I'm so sorry to hear that! What a rotten thing to have happen. But it sounds like your MO is handling it soyou will have help the next time right away.
@abart, welcome! We are a cozy little group. I'll have to let others speak on the emotional impact of this. I was already taking an antidepressant/anti-anxiety med before the diagnosis. I truly think it has helped me sail through this relatively happy, considering. (I say that now ... hoping against hope that the magic formula that worked for me to prevent all the headache and nausea, will work again tomorrow morning).
On the subject of interferon - I can't remember who asked about it, but I figured it might interest you - I forgot to mention that I talked with my MO about the side effects that I found scary. He said not to worry, because the people who get the really bad side effects are getting a shot of a whole vial at a time. Whereas my dosage is .05ml, basically a few drops. It goes just under the surface of the skin and makes a "bubble" which is an immune reaction. I had my first shot on Friday and will give myself my second one tomorrow.
Happy labor day to all of you. I hope you get to enjoy it to the maximum with your families. I'm planning on being busy with some fix-up projects around the house if I feel up to it. It doesn't sound exciting in the least but in my book, any day I can be up out of bed in the light is a good one!
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bunnybumps - I am so sorry to hear about your rough time. That is awful. I can imagine you are not looking forward to your next treatment. Are you getting anti-nausous meds in IV before chemo begins? I take Emend for 3 days starting with day of treatment and I think it works very well. I hope you can find some ways to counter your S.Es for the next time.
You body is at war with cancer so all the S.Es are battles along the way that have to be won. I keep telling myself "this too shall pass". Pretty soon we will all look back at this nightmare and be thankful it is behind us. But for now just keep putting one foot in front of the other. Plow forward armed for battle.....ready to win the war.
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Greytmph2:
I'm afraid I may not be awake enough to reply comprehensively, but I didn't want a minute to pass without you having a response. I think you have summed up all the fears and concerns that all of us are facing and learning how to manage. It just sounds like you poor thing are facing all of them at once and that has to feel so insurmountable and scary. Your MO and coworker certainly aren't being what you need. And to feel so ill and have gotten so dehydrated and lost so much weight is exhausting all on its own. I was diagnosed pretty advanced metastatic out of the gate last month. My MO and RO are pretty positive and optimistic and there are many women on this site who are celebrating 5, 10, 15 years with advanced BC. So until you know from the scans and biopsies that this is your diagnosis, I would try to focus on the things that are real and more actionable. But know that this board--and others--will be here for you no matter what your results say.
Dealing will all your concerns at once must feel like taking sips from a fire house. Can you break it down to one or two a day and try to come up with a few options? Like taking care of the dog: do you have a friend or neighbor that is willing to come by when you're at an appointment or not feeling well? I've learned that I've needed to give up a lot of my independence and receive help wherever it is being offered. It has been hard. I've had to admit that right now I sometimes can't be the mother to my kids that I want to be and that they're used to.
Please keep reminding yourself that you will get through this. And will be so strong for it. We are all here for you.
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Greytmph- You aren't gonna break the camera! You're being too hard on yourself. You've had surgery, a BIG step behind you now. Excellent! Hugs and pats on the back to you for getting thru that. You deserve WAY more credit than you give yourself. A PET scan itself isn't painful, but the anxiety of what it can show is rough, but it helps the doc give you the best treatment to ultimately keep you here as long as possible. We want to see you survive and thrive, but sometimes staying upright involves going through scary moments. You're not alone (got us!) and you can do it. The mind is more powerful than you think, and you can access your inner strength (Yes, you have it!), put your foot down and do what you gotta do. If we believe in our true strength, we can prevail. We can do this. It's not easy, but it is doable.
Maybe see if they can do low dose chemo? Let docs know of your transportation, doggie-st-home, and work situation, they can customize your treatment to these important life matters. (Easier SEs) what might help too is excersise-start out light. (If you don't do already) It REALLY helps the body endure this.
We woman can handle childbirth, we can handle this! Foot down, fist in the air!
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greytmph- our last posts hit simultaneously, I didn't see your most recent. Aw geeze, your friends don't sound decent. Sorry to hear about friends and family situation. Especially now, you don't need "toxic" people in your life who will drag you down. Look for cancer support groups in your area. Or is there church groups who embrace folks in need of emotional support irregardless of religious affiliation? New, sympathetic friends should be welcomed into your life.
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greytmp2-My heart breaks for you. I have been so lucky to be soooo supported by my friends, family and whole community. I live in a small city and our community has really rallied around me. One of my good friends and her husband own the physiotherapy clinic. Every year they do a 5 & 10 kilometer fun walk and run. People have to register and also bring donations. This year they are doing the run with the proceeds going to breast cancer research. They are doing this in honor of me. I do have the people who avoid me like the plague when I see them at the grocery store but they are few and far between. I hope you can find a source of support. To be alone on this roller coaster ride of emotions and treatments would feel insurmountable. I hope things shape up for you. Know you are thought about and you will get thru this. Sending hugs and well wishes your way
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