Starting Chemo April 2016
Comments
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SUSANPB - very well written and thanks for giving us all a boost. Everything you say is dead on, we can do this, we can do our own research and help ourselves the best we can. We have been dealt a challenge and we can sit down and endure it or do the best we can to overcome it. I have renewed confidence after reading your post that I will soldier on and do what I have to do to be rid of this cancer for good. I was feeling rotten when I got up this morning, the worst day yet, but now I am full of confidence that today is going to be a good day, because I am going to do my best to make it a good day. Thanks Susan.
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I love reading all of these post. It's nice to have people who understand all of the conflicting emotions that can change within seconds. I have been skimming the book "anti - cancer a new way of life" and one quote has stood out for me."Change the Terrain". One of my girls paints me an inspirational quote after my treatments. I requested this one. It will remind me that I can be an active participant in my long term recovery. Exercise more, eat healthier, drink less, find a way to alleviate stress. Be in the present day more. Appreciate the medical advancements that have developed to treat this. And remember that everyone is fighting a battle of some sort. Mine is just obvious with the lack of hair. But I know it will grow back in time and life will continue. I just want this ordeal to help me become a better person.
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SusanBP, thank you
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Ahhh, coffee tastes good, and the clouds have lifted. Now, it's easier to put things into perspective. It was 2 bad days out of 14 - I can handle that. It's just when I'm going through the bad days and they are worse than I have ever experienced even when down with the flu (although that one time with the stomach bug was way worse!) I get whiney and miserable.
Wellshoot - I love your idea of better food availability! Here in the Bay Area we have the Second Harvest Food Bank who provides food to 1.5 million people a year (yeah, even here where $ seems to fall from trees - the cost of living is insane, and people simply have trouble making ends meet). They work with the farming community and any excesses are delivered to them. I think they could be a good model for helping you set up what you want. I can put you in touch with them if you wish.
Gracie - yeah, it is a roller coaster ride. Fortunately, it should pass relatively quickly (yes, my optimism is back).
Cody - that is so funny that you look up real estate - I've been doing that, too - and lake front properties. I even found the house I want - well at least the area I want. I'm not quite ready to move yet. But while I love my house and living where I live (I am in the cutest old town with the most adorable houses so walking around is a joy). I want to be in the mountains and go hiking every day. I miss being in the woods.
JLB - Yes, mental health is a priority. I think it's important to see the cycles, too. I'm on my 3rd round. I'm typically pretty good (maybe a little weak, but in general okay) every day except 2-3. Days 5-7 I tend to feel really weak, depressed and just overwhelmed as if this will go on forever and I'll never be back to my old self again. Then I get to Day 8 and the fog lifts. Knowing the fog will lift helps, but I still get depressed. I'm hoping for you, in the next day or two you'll feel more "normal".
Kat - I love the advice your counselor gave you. I also have a Fuck Cancer necklace. I wear it with my "Not All Who Wander Are Lost" necklace my daughter gave me for Christmas one year to remind me of who I am - and it's not a cancer patient.
NJNancy - I was telling a friend who came to visit (someone who is also going through this) that I love love love that people what to call, visit… But sometimes I just don't want to be bothered. I'm an extrovert/introvert - right on the line. Sometimes I want to be alone. Sometimes I want to be surrounded.
Heidi - Welcome to our group! Sorry you have to be here. I think the bad days differ for all of us. Mine tend to be Days 5-7. Not nauseous, just weak. Unfortunately, it will take a couple of cycles to really determine how it effects you. But if you got your chemo on the 27th and you're doing okay now, that's a good sign.
Annie - I think it's natural to have both sides of ourselves come out at different times. I agree that there are worse things then our diagnosis. A friend is losing her husband to brain cancer - and the man who is undergoing hospice now is not the man she knew even a year ago. Brain cancer does horrible things to people. He's 56. A 6 year old also just died from cancer - poor kid. And then there are the other things that make what we have look like a walk in the park. It's also okay to feel depressed and icky and all "Why do I have to deal with this?!" occasionally as long as you don't let that side take over the other side.
Hymn - you have another good week before your hair starts falling out. I get what you're saying about the donations to cancer patients of your hair. I've done a lot of fund raising (raised thousands of dollars) for cancer research. I look at it kind of helping me now.
Have you looked into the idea of someone making a wig for you with your own hair? I wonder if that would be possible. Zo - so happy you're feeling better. Sorry about the over correction, but man, you probably feel excellent now. I know I do.
I love your idea about a daily good list. I used to do 3 things for which I'm grateful. I need to get back to that. I might actually start a thread on this site. It would be good as a reminder. Susan - I did not go through what you did, but when I first found the lump it was huge and I felt that it had to have spread, so I was busy writing my will. i was convinced that this was the end. I've gotten over that, but the fears are there. And yes, I think we can determine our own outcome to a point, as well as the way we react to this. It is important to not let ourselves be dragged down into a morass of self pity. I think we are all fairly positive about our outcome and fighting this, but occasionally we wallow in self pity. That's okay, too, as long as that does not become what defines this journey. I'm typically very optimistic - I just had a bad day.
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Hi everyone,
Sorry that I'm so infrequent in my posts. I spend a good week recovering from my TCHP, and then there's so much to catch up on, like laundry. My husband and son are really good at loading and unloading the dishwasher, but not so good at the rest. Plus, we're building a house -- it will be finished right around my last infusion (#6) of TCHP, though the H continues until next April -- and I keep getting calls to pick new light fixtures because the current one is out-of-stock, etc. I know, it's hardly complaint-worthy, that I get a fab house when this the chemo is over. I'll have a spare bedroom too, for any of you who wants to visit Austin TX when we're done with the chemo, especially those of you posting those gorgeous pics of coastline in various countries. I'm having travel fantasies.
Round 2 of TCHP was similar to round 1. It wasn't any easier, but it is getting more familiar. I'm stocking up now on comfort foods that get me through the lean days where I have trouble eating, like Malt-o-Meal, and soggy cereal for my sore mouth. I didn't end up taking any anti-nausea meds this time either. I snack all the time, but I'm never in danger of vomiting. Am I the only one who doesn't need them? I get other SEs though, my whole esophagus is sore for a bit and at that point I can feel my port in my throat too -- that's no fun.
Katjadvm - I tell people that there's never been a better time to have breast cancer, and what I mean by that is that treatment is improving all the time. By the time your girls are grown, we may have figured it out completely, and chemo may be a thing of the past. Your girls will be okay, and so will mine.
weRwarriors - I love your posts. You're so sweet to show us how much you love your mom.
Cody-mx - I look pretty cancer-patient-y now, even with my baseball cap. I wear a hat most of the time, so I don't get depressed about the loss of hair. I think most of us are either wig or hat gals in this. If you do wear a hat, I think bigger, bolder earrings can go a long way to dressing up the look. Just a thought.
Thanks to everyone for hanging out with me here. It's been really great for me to have this conversation going whenever I need it.
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had my second round of cytoxan/taxotere s yesterday. Had an allergic reaction to taxotere apparently not uncommon. Lots of benedryl and they finished. Neulasta today. I take claritin everyday, praying for less bone pain this time.
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I also had a reaction with my second TC, treated with increased steroids and Benedryl. Didn't happen in subsequent rounds.
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it was scary but they knew it could happen during 2nd round and all over me in seconds. I hate the benedryll but now I'll have to have it.
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CJSharma: Oh my gosh...we all have bad days. And I think we need to acknowledge that it is completely ok!
Numb: You brought tears to both my husband's eyes and mine. Thank you for letting me know.
WeRWarriors: You also brought tears to my eyes. You are so brave. And yes...Not my story...I decide.
Cody_mx: You are welcome. :-)
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Wellshoot: Change the terrain. I love that too. :-)
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For those of you who are doing or know anyone who did neoadjuvant chemotherapy... I have just a few questions.
My mom is ER- PR-, HER2+. Before she was officially diagnosed she knew about the lump and let it advance due to work stress and fears. Anyways, it has advanced in to a rather large mass. So her only option for treatment/cure would be neoadjuvant chemo (AC x4, T x4 and a year of Herceptin) then surgery and radiation.
The main issue is... my mom is having quite of bit of discomfort on her left breast (where the cancer is). I'm not sure if it's skin irritation from her bra or clothing rubbing but whenever I look at her I always see her face grimacing and she looks very uncomfortable and depressed. She mentioned the skin feeling "raw" and irritated to the oncologist and the nurse and they suggested a hydrocortisone cream. She says it is helping it a bit but she never really opens up to me about any of this. I know it is her choice to be private and maybe somehow she thinks she's protecting me but it is only adding more stress and leaving me in the dark.
So, my question is... shouldn't these symptoms be diminishing if the chemo was working? She has only had 1 AC treatment so far. Her 2nd is next week... I go to all her appointments with her but she always says "everything is ok" and never really addresses the issues.
I guess maybe it takes a few treatments to really know if the treatment plan will be effective...?
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WeRWarriors: I had a lot of discomfort with my tumor in my right breast. It was right under where the side of my bra hit. I honestly wouldn't want to be putting any type of hydrocortisone cream over a tumor. What really worked for me was super soft gauze pads. And now, I am only 2 treatments in to my chemo, it isn't bothering me anymore. It takes time.
There might be others that have some good info here.
xo
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weRwarriors - maybe a super-soft cotton bra without underwires (if her cup size isn't too big) would help in the meantime. Maybe?
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Hi everyone. Long day at work and my third AC tomorrow morning. I just wanted to say that I really enjoy reading everyones posts. I laugh and cry, but always feel comforted. thank you for sharing.
bagger: thank you
Susanbp: loved what you wrote. I will add "not my story" to my mantra list. I have always believed that I have a huge role in determining my fate. I choose to survive and live well.
weRwarrior: my tumor is not as big as your mom's but it definitely started to hurt after I started chemo. I am doing neoadjuvant chemo because that is what they recd. the pain stopped about a week after my second AC as the mass started to soften. I was told that is a good sign. Hopefully, your mom will start to feel better soon.
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Thank you for the replies :
We met with the incredibly friendly radiation team this afternoon. My mom expressed her concerns about discomfort in the area. They questioned why the medical oncologist would suggest hydrocortisone cream. She gave my mom a antibiotic ointment, gauze pads and suggested taking Tylenol as needed to take the edge off. So far we have met great staff who are personable and kind but the radiation team were awesome... (Maybe that's because they were women... Lol)Way more informative and helpful than any of the other doctors we have met so far. So that was a plus today.
I guess I have to remind myself that everyone's situation and symptoms are different. Hopefully the chemo starts kicking butt and does its job. I'm going to ask the oncologist next week at what point onewould "see/feel" any changes.
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Hi everyone,
We're already for Round 2 tomorrow morning and I am feeling just 180 degrees different from before Round 1. Some anxiety, but just a bit. I felt just peaceful and serene at work today. Grateful to get to progress tomorrow, and as my dosages are lower and I am better prepared, I am expected it to be way easier.
What I'm doing different:
Take Lorazepam if I need...jeez, if not for this than what for?
Take the Ambien nightly...jeez, if not for this, than what for?
Add Compazene for nausea
Start the Pepcid early (done)
Be ready with sandwiches and crackers
ice fingers and toes
Suck on popsicles
Be diligent about the mouth rinse...I even bought gourmet salt...
Walk, walk, walk
Eat, sleep, pray
Get on the boards and message my friends and don't isolate like I did last time.
We're all ready with the cold capping supplies, not looking forward to that but I'm gonna do my deep relaxation and check out while at the lab and then tomorrow when we get home, its way easier and we have the latest Transformers movie ready for me! I'm looking forward to that.
Best to all of you dear sisters, and peace
Annie
SusanBP
YES! Thank you for that inspiration and truth! I feel and have learned and am engaged in all the above. For me, I don't really feel or identify with the model of the "battle" the "war", for me this journey has been one of moving through fear, great surrender, acceptance, and walking through discomfort (yep...I'm cold capping too and i hear ya on that one :0) and showing up to share and help others. That's the walk of life and healing, for me. But I also want to say there is no right or wrong way to do this journey and every reaction/response/upset/blessing/gratitude/complaint/feeling and emotion is welcome, we are all in all of this together for each other. That's the story!
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HA! After I posted, I got in my Xterra to run to the store and a song came on the radio, a gift for all of us!
"This is my story, this is my song...."
hugs
A
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What a great day of great posts! Susan BP--definitely incorporating that's not my story into my story. I have worries often, but I try not to dwell on them. I worry I am perhaps being under treated, though I realize that isn't rationale; I researched my situation and paid for a second opinion with a highly regarded breast oncologist at a major university medical center, who agreed with my treatment plan,for me, which doesn't add Perjeta to the mix, and doesn't have the AC component at all. And I know I have a genetic mutation that makes cancer cells have access to growth hormone Stat 3 in ways that aren't targeted by any particular drug I'm taking, but science isn't there yet to do anything about it. So I shift gears and hope the chemo is getting any cells left floating around, post-surgery, and then, I am going to shift to the Anti-Cancer lifestyle.
I've been a very conscious and healthy eater, but this Anti-Cancer complete body environment will take some extra work. Wish there was anti-cancer take-out and yummy chic anti-cancer restaurant to go to! I'm tired now, and the effort to shift gears seems overwhelming tonight, but I will do it. The book Susan BP recommended, by Schreiber, Anti-Cancer A New Way of Life, is really good.
For me, harder than changing diet will be to reduce stress. I already do exercise and happen to love physical activities--walking ,hiking, and swimming, along with a bit of skiing in winter when I can. But I live a high stress life, and have for a very long time. Some of the stress is not within my control at all-like a chronically ill family member. But some is.
But other stress could be reduced, and I am going to make changes to do that. Friendships and relationships that are not 50-50 (on balance),and work---way too much going on there to chat about here, but I have been thinking of changes for some time and having cancer invade me has made me realize I will make changes...I just don't yet know what they are.
Have a good Friday ladies. I'll be bringing on those chemical warriors tomorrow for their search and destroy mission, and to fellow Friday ladies, good luck too!
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Does anyone think that the Dexamethasone is doing us more harm than good after the chemo infusion? The thing is that I get 8 mg to take for 3 days afterwards and then stop abruptly to nothing. This causes a crash and makes me feel awful. Years ago I was on a steroid for a chest infection and came off it abruptly and got pains down my left arm and that is exactly what happened to me after both chemo infusions. I contacted my liaison nurse yesterday and discussed this with her and she said she brought this up with the Chemo Dr and was told that the amount of steroid taken for so few days doesn't warrant tapering off, but while that might be the case for most people, I find it is not the case for me. I feel I need tapering off it. I thought I was getting a heart attack after the first infusion but now I am thinking it was caused by the sudden stop of the steroids. I got this terrible feeling again when I stopped this week but now that my body had adjusted I am okay now. I can cope with the nausea as we have medication for that, but the side effects of just coming off the steroids suddenly does me in. Are these steroids essential for the chemo infusion and could we manage without them ? I am definitely going to do my own tapering off them the next time. Anyone else experience anything like this or am I the only one ?
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Susan:
I just had my first chemo yesterday - and I read your comment with such ancticipation reading each line, each sentence, wanting to read more and more. You have given all of us who read it hope, inspiration and just a good feeling. Yes, this journey may not be what we would chose to take, but it is what we are taking and (as the character in the movie Shawshank Redemption said) we'd better get busy living, or get busy dying.
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Numb my doctor does taper off my steroids, I take a different one than you, but its first 3 pills for 2 days, then 2 pills/2days and then 1 pill/2days, maybe something like that would work for you? Even like this i do feel a crash when i stop, thats also when the side effects kick in..
Zoziana, one of the first things I realised after I was diagnosed was that I did not want to spend any time with any of the people in my life I consider "toxic". So Ive been cutting them out, funny thing is that without trying, people who used to be really close, and who I really love, but for diverse reasons have grown apart, have now reappeared in my life, so that has been a really happy thing. Im replacing toxic people with loving people
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CODY - That's interesting, I definitely feel I need to be tapered off the steroids and if I have to do that myself I will the next time. It is the crash that brings on these terrible side effects because as soon as my body has adjusted to no steroids I am fine again. I must enquire as to why we actually need the steroids in the first place.
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Hi everyone. Just finishing up my third AC infusion. I will ask about why we are give steroids. I have to taper mine off over a couple of days. Also curious if anyone is going in for iv fluids the day after their infusion. i have chemo on friday, then get my neulasta and a liter of fluids the following morning. Thanking about doing in for a second bag on Sundays because it seems to help so much. Have a great day chemo pals.
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Hi Everyone -
someone asked on meds - I take my anti naseau meds pretty regular for the first 2-3 days after and then just as needed after that. I do the Claritin a day prior to chemo and 7 days after and the steroids on day 2 and 3 and the nueralasta (sp) shot on the day after plus since I am anemic I am having iron fusions right now too. The one anti naseau med def makes me very loopy my friends are having a ball when I take that I really only took it once at night this last time but the first time I had to take it much more and apparently it was pretty funny.
Have any of you taken your kids to treatment with you? My daughter (finishing 6th grade) is going Wednesday she wants to be a doc when she is older and has already skipped a grade and is very bright .. she is currently doing some online high school science course s and she can hardly wait to meet my oncologist and see how my chemo goes. She apparently even has some questions. My boys are younger and have no interest but she has even talked to me about the bracha gene I love that she is smart way beyond her years but its tough to know that she understands genes and knows about the bracha gene and the decisions to test when she is older already.
Food has been great .. my cravings are mainly healthy - cucumbers... apples... taco salads.. turkey and tomato sandwiches I have no desire for anything like pizza or chocolate or anything like that . I am thankful for the cravings.
I am doing my chemo Wednesday this week as my little one is graduating from kindergarten Tuesday and I didn't want to chance feeling ill, I will find out then whether I need to continue with more iron fusions or what - secretly I like them over the pills but its a pain to drive and get them done so many times.
Hope you moms have a wonderful mothers day sunday. This is my cleaning day so I need to get refocused
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Hi Girls, I am also in the May Chemo group but wanted to hop over here too. I just had my first treatment 4/30 T/C x 4. Itwas def not what I expected. Finished chemo around 6:00 pm. on Saturday. Felt OK, had some dinner. Went to bed 9:00. Woke up at midnight drenched in sweat with a pounding headache. Felt completely off my rocker. Was pretty scared, being that I had no idea what to expect. Since most people said I wouldn't start feeling good days later. Sunday was a fog, headache, just tired and crummy. No nausea. On body Neulesta shot went off Sunday night and by Monday afternoon the back pain kicked in and by that night I could barely move. Back, legs, butt. Anything below the waste ached horribly. And I have a pretty high tolerance for pain. That lasted Tuesday, and Wednesday. Still was tired out of it. Worst part Monday I got constipated horribly. I am never constipated. Took Senikot which they said I could. Now I know to take it before chemo. Thursday started to feel better and appetite is back and today Friday. Just slightly off. But I still have lower back pain and twinges. This would have been way more doable if it wasn't for that damn shot. I give blood Monday and want to talk to my Dr. before having another. I heard some people don't get the shot? Just wanted to share my experience and hear from you girls how your doing. Plus I have 3 little ones 6,5, and 2 to chase after! I was 35 when diagnosed
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<and now a breaking LIVE news flash from the infusion lab at Peace Health in Bellingham Washington.
Well Round 2 of TC+H every three weeks is underway. Taxotere is on the drip right now and my head is freezing. Everything is easier this time. Feeling a bit woozy once the Taxotere starting coming but I think its just about finished. Then the Carboplatin and then home.
Its a beautiful day in Bellingham. I went to work for an hour and a half this morning to get some paperwork finished and to get some hours in. Enjoyed the quiet lovely morning.
Numb - I'm not sure about the steroid but you know your body and your MO hopefully will help. I didn't even think about SE from that. Its confusing. Ask the nurses too. I'd be careful to not self-medicate without talking to your MO to sort it out.
Christine - do you know about taking Clairitan the day of the shot? Really makes a difference for me. There are also different kinds of WBC boosters, my MO used Granix which he feels women do better on. I come in for shots 3 times now the first week after chemo and then 2 x a week. Talk to your MO and talk to the nurses. I hope that it goes way better for you next rounds. Its so nice to start feeling better isn't it? I had a normal weekend last weekend and it was just lovely.
Create - that is very awesome about your daughter getting involved and going to treatment with you. A doctor indeed! Good for her! Its great to be able to tweak the timing to get to events. My daughter is getting her MS in Biology and I'm going to take a trip later this month to watch her give her presentation on her research and then in June for her graduation. The timing between my 3 week cycles is perfect.
Kat - I've heard about the IV fluids and I would be game for that, anything that helps. What do you notice from it? I think the steroids keep down the overall reactions to the medications, they block inflammation and allergic responses.
Zoziana - I liked what you said about the chemical warriors search and destroy. I do this meditation to welcome each chemical into my body to search and destroy every negative cell, trace of a cell, energy or thought of cancer , to remove it completely from my body and turn everything to positive, doing no harm to the rest. I look at this as a chemical cleanse. Right now, Carboplatin is running through doing its most excellent job.
YAY! On the last bag, 30 minutes we get to go home. I have to wear the caps for 4 hours after the Taxotere but I've got a fun movie waiting for me.
SOOOOOooooo much easier today. Thanks for all the hugs and support!
A
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Hi everyone. Done with my third AC. Today they decided to give me a liter of fluids after the chemo and I have to say I feel tremendously better than the last two times. The first round I was zonked because of the iv lorazepam. The second chemo I skipped the lorazepam so that I could stay awake and school my husband at Scrabble. Today, they offered to give me a liter of fluids with or shortly after chemo and I said sure, couldn't hurt. It was awesome. I left feeling 10,000 times better than the other two. As far as headaches. Apparently the long lasting anti nausea meds they routinely give iv prior to the chemo can cause a wicked headache in some people. So they give me 600 mg of ibuprofen and the headache went away. Definitely going to be getting my liter of fluids tomorrow and again on Sunday morning. It has made a huge difference in that brain fog feeling I was getting. Hope it lasts.
susanbp: love the nutrition facts.org site. Thank you for sharing that info. Ordered my broccoli seeds and will be sprouting away soon. Do you sprout your own? If you do, any tips?
forgot to mention that to help control nausea I eat a little something at least every hour to keep the nausea at bay. Works well for me. take care everyone.
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Annie great picture! Here is what we got out of storage today and what I am going to use for therapy for the rest of my treatment...Happy Mother's Day everyone whether you are on, have one, had one... peace and health.
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Hi everyone,
I'm all done with round 2 of 6 of TC+H. It went great today and I feel really good with my regime changes. Feeling peaceful.
7 or 9 NOW that is chemo-THERAPY! Excellent! I've been wanting a camper trailer and I'm going to move forward with it!
KAT - Yay!!!! I'm so glad that you have that new regime and its working for you. I've made changes in my eating - last time I had spicy food the night before and then pizza the second night. I'm on strict BLAND sandwiches, little bites, recent. I also started Pepcid and Pepto Bismal sooner. So far soooooo much better.
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ANNIE - Yes, you are right, I would need to consult with my MO before I decide to taper off myself, as I don't fully understand why we are getting these steroids in the first place and I could be upsetting the balance. My nurse said that if I was to taper off I would be on the steroids longer, but that would be okay, I would prefer that to getting a sudden withdrawal symptom. Best wishes for round 2.
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