Starting Chemo September 2015; join us!
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Thanks for the tip. coconut oil in it's thickened state is easy to use and I think the lemon will help with the stomach too.
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Mommadigs: mouth sores were on the list of my biggest worries too!...abut so far the mouth is a non-issue other than a little dryness. Everything tastes fine too which is good news since I love food! :-)
I have been rinsing with baking soda at least twice a day. it feels good to feel like I am doing something proactive and that is an easy thing to do.
Anyway, I am glad you have found our group, there are some very strong women here, and we will help each other. Adding you to our list and good luck!
Hugs
Octogirl
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I don't want to but I'm about to dive into a bottle of milk of magnesia. It's getting that desperate.
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sotherncharm i missed you.
The marker is placed so they know where the tumor was.
1 liter gatorade plus one litter of water in big container during infusion keeps you well hidrated
No side effects, just some dizziness from decadron, nothing major.
I do not know what is going on but my hubby says the tumor is already shrinking, he can tell the difference between now and before and is definitely SHRINKING!
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Hi charm,
I'm still doing okay at the end of day two. Eyes, nose, and mouth are dry and I'm a little tired but not bad. I'm trying to ddrink as much as I can. Neulasta shot is in the am. Hoping for minimal bone pain from that.
I see you are getting the same cocktail as me. The infusion process was uneventful but long. They gave it to me in the following order: herceptin 90 minutes, perjeta 60 minutes followed by 30 minute break, carboplatin 30 minutes, and then the taxotere for 60 minutes. A short time.with just saline to flush the line and that was it.
I hope everyone else is doing okay. They have been pretty silent today.
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Sotherncharm last night the tumor was so angry, swelled up and deforming my breast. Today hubby has to palpate so much deeper to find it, definitely the treatment is working.
Twiggy so happy you feel good, hugs and more hugs
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CarolinaAmy please I would like details on the head shaving. I am going to do it tomorrow (Sunday) so details as soon as possible please.
I am on day 9 and feeling much better, relatively. Energy is at 80% of normal, heartburn is almost killing me, and mouth sores have set in. Some moments, despite feeling better, I just think "I can't do this". How am I going to get through 5 more rounds of chemo?
I went to a movie today called Maru. It's about this really difficult mountain climbing expedition where the guys almost died and battled through starvation, lack of oxygen, freezing cold, exhaustion. I just kept thinking, THAT'S MY LIFE! I feel like I'm climbing an unclimbable mountain and every day I am living in the "death zone", batting pain and misery with these side effects. It's almost too much to bear.
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Southerncharm - I just performed a self breast exam and it is SMALLER. For SURE! My tumor was big (3 cm) and very close to the skin so easy to locate and feel. Can't believe it is actually smaller!
I had significant tumor pain prior to treatment (which is how cancer was found as it was pressing on a nerve) but have had almost no pain since I went OFF birth control pills just after diagnosis (I am 90% ER/PR+).
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Gladto hear that teacherhiker, please just hang in there, we r thinking about you and i wish you all the best, strength and hope
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Thanks everyone for sharing so many details! You all are helping to put my mind at ease. So glad many of you haven't been hit too hard with SEs. I really feel for those who are having a harder time. I'm so anxious to get started. Hugs to all!
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I wanted to post this pic of the neulasta self injector for all you gals who have it coming up and are nervous. The injection was no big deal for me. Bone pain was excruciating on day 5 but overcome with 2 days of narcs. No significant pain since then.
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Dear greytmph2 --- welcome back with open arms!!! Wish I knew how to help you through all this scarey cancer stuff, but haven't figured it out for myself yet, not really. But OF COURSE you are welcome here!
This group has been keeping me sane
It's given me a lot of practical survival hints, what kinds of side effects to maybe expect (so I can say to myself "No, you're not dying, it's only the chemo!"), but most of all, a whole crowd of wonderful ladies dealing with the same inconvenient and annoying cancer-thingy cheering me on and giving me enough hope to keep fighting. I sincerely hope you can draw the same strengths from this group to help you on your own journey --- however you decide to deal with your cancer ((((hugs))))0 -
greytmph2 you are always welcome back!
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Yes CarolinaAmy like teacherhikermom I would like info on he head shave. I have my 2nd treatment Wednesday and anticipate needing to shave by Saturday. I have stubborn thick hair that is still hanging in there. But it is slowly shedding and is really limp with awful grey roots. It feels like doll hair. The other hair on my body is quicker to fall out. Underarm & leg hair are sparse and pubic hair is bolting fast. My MO said the hair we don't want to leave goes first and the hair we want to go sticks around. Hah!
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Hey everyone! Popping in from the June group. Regarding the head shave: it is recommended that you go with a short buzz cut rather than a "true" shave. You will be less likely to develop folliculitus.
Wishing all of you the best as you move on with your treatments. Those of you with bad side effects, talk to your MOs now! No one should need to suffer! Better living through science
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Hi All,
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks Everybody!
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Greytmph--oh, thank goodness you're back!
Flower68--I am so excited to hear that the tumor is so noticeably shrinking. That is HUGE news!
And I've heard that tumor pain on neoadjuvant chemo is actually a good sign that it's being destroyed by the chemo.
Okay, here is the post I put on our private Facebook page. There were multiple pictures, but since this is not a locked-down site, I have to stay private for now (will explain once the reason for it is not an issue). I'll gladly PM or email the photos to anyone who would like them.
***************************************So, chemo... and hair. It's kind of the elephant in the room.
Not all chemotherapy drugs cause hair loss. The ones I'm taking, however, are an absolute. A surprising percentage women find this the most traumatic part of treatment. Thankfully I'm not one of them; I'm more concerned about long-term side effects or heart damage.
Most women get a short haircut before starting this process, as the transition is much less shocking. Some weeks ago I realized, though, that if I skipped that part and went straight to shaving it off, my hair was more than long enough to donate to organizations who make wigs for kids with cancer. I also had the option to have it made into a wig for myself, but I honestly didn't feel like that was the right use of this opportunity. (My sister's reaction? "#damnstraight. With that head of yours, you're gonna make ten people very happy.")
My hairstylist, the incomparably gifted Beth ____ at ____ (who, despite closing the salon for two hours would not let me pay for any of it), thought this was a great idea. She's been down this road with several clients and gently guided me through some aspects, having seen how women are affected by the process. She tactfully said that she didn't want to touch me until I had a wig in my hands and also said she would cut any wig I found into something appropriate for me.
So I spent Tuesday at this little shop out in G___ run by a dear older woman who has helped countless chemo patients. With Michelle ___ and Kim ___ as my partners in crime, we turned it into a fun girls' outing instead of something morose. I'd only planned on getting something believable for the home study and really not wearing it otherwise, but I was shocked at the decent options out there without even venturing into the 'good' stuff!
Yesterday was the day. I wanted to do it before it started falling out in clumps and lose the chance to get it all for donation. It was giving subtle signs that it was coming--lying very flat and limp close to the head. But rather than it being a depressing step in the cancer journey, my girlfriends turned it into a party. Beth had the salon closed except for us, and when I arrived, the girls were pouring mimosas! Imagining myself on the other side of the chair, I know this wasn't an easy thing for friends to witness, and I am so grateful that they were there with a hug, a smile, reassurance that I have a great Sinead O'Connor head, and permission to have whatever reaction I chose.
So now I have a decent wig in a style that my hair would never do in real life (as Beth has said, I 'have a sh*t-ton of hair') as well as one that's a little more similar to what it was before, in case it helps ease the shock for the little ones. [Youngest daughter] is amused, but [older daughter] is taking it pretty hard. Showing her ten ponytails' worth of hair (8 ounces) for kids who are sick (good guess, sis!) helped make the point that I want my girls to get from all this: that we have a choice about how we respond to situations that are undeniably difficult and there can be opportunities in the midst of it.
And make sure to see the pic [husband] sent me while I was out to lunch after the shearing. Huge hubby points scored on that one. heart emoticon (ETA: Whoops--it's in the comments!)
There really are no words for the gratitude I feel for my friends who are walking alongside me in this. You are absolutely treasured and turned this into as positive an experience as it could possibly have been. I love y'all like crazy.
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And yes, it's a buzz. The remaining hairs will fall out in about a week from what I understand and there was no reason to torture my scalp.0 -
Here is the major problem for me. My period started a couple days before chemo. Normally I have horrible migraines the last couple days of my period. But the chemo seems to have amplified everything bad about period week. I have an enormous capacity for pain normally, but all I can do this week is cry and whine. The pain meds he gave me are a joke. My stomach feels like a bus is parked in it. Now I have a massive headache and no way to deal with it. Seriously I was expecting to vomit for a week and be really tired but this is unbearable. I can't do this if it's relentless for 4 months. I'm only on day 5 for crissake!
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Annie- I hear you on the period. Mine has been irregular, every two months. I got it day after surgery and third day post chemo. Aaarggghhh
hang in there.
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Annie and AG: I read that about the periods and shudder...mine were bad, but thank goodness, now finally gone for good as of two years or so ago. I'd be miserable too. Please consider calling your MOs office and telling them this, there must be some help available. Hang in there!!! Hope you feel better very soon!
Teacherhikermom, sounds like you are feeling better, so glad to hear from you.CarolynAmy, I really liked the hair story, thanks for sharing. You are braver than me: still in denial. Except: more grey hairs this am and I am sure now that it will turn totally grey but not fall out. I'm delusional that way...
Speaking of Grey, Grey, I never took your name off. You are always a part of our group. We will support you no matter what you decide, and you can do this!
As for me: a good evening last night, and managed to get more sleep. Seven hours. Wow. Took the last steroid last night, am going to discuss a lowered dose with my MO at checkup next week. However, the sleep was disrupted by bone pain: third shot of Neuprogen was the worst yet, especially around midnight (took the shot at six pm or so). Aleve and Claritan take the edge off, but not looking forward to tonight...
Hugs to all!
Octogirl
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AnnieB43, I feel your pain. I am here with you sister. It's an unbearable burden, there's no way around it. Keep slogging through, as will the rest of us along with you!
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What a great experience CarolinaAmy! Thanks for sharing. It brought tears to my eyes. I feel a little less afraid to have my head shaved. Hope everyone is doing ok today.
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Good evening September ladies,
Hope eveyone is doing ok. As for me, i have to say that starting today we are no longer able to feel not even a pea size, or any size for that matter, from what used to be a 3cm tumor until friday 9/11. I would have not believe it but it is happening to me and I am truly amazed about the effect of the medications on this cancer. So ladies please hang in there and do not loose your hope: there are miracles out thereand we are living them.
I have to stop now, too many tears and many emotions especially looking in the eyes of my dear ones. Hugs and more hugs to all and each one of you.
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flower 68 that is amazing results! That is all you need to keep going!
Hi September ladies, I have been watching and learning from you. I maybe starting chemo in the end of September or early October. The final decision will be made on 9-18. My story is I had a double mastectomy in April 2012 for a 1.2 cm IDC tumor in ghe right breast with - lymph nodes which was Er + and PR + and HER2-. I had an oncotype score of 16. At that time I did not need chemo or radiation and started tamoxifen. This July I had a local recurrence in the original biopsy scar in the right breast. The surgeon thinks it grew from cells left behind from the original biopsy. It was in the subcutanoeous fat and was easy to remove. The recurrence was .8 cm with 0/3 lymph nodes and my CT scan and bone scan were clear! Now it is time to decide the care plan. MO is open to doing chemo but at first recommended radiation and switching to AL drugs. I explained I wanted to be aggressive because I had a recurrence and she understood. Now she is going to present my case to her tumor board and see what other MO s say. We will meet on 9-18 to make final plan. If i do Chen it will be 4 cycles of TC every 21 days.
All that you have shared has been very helpful but also made me nervous about SE. In my heart I feel I need to do chemo because I want to be able to know I did everything I needed to do so I can move on.
Good wishes to all of you!
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Flower--I am so happy for you! Nine more days and I can start my battle. Hoping everyone will soon see similar results. I was smiling so big when I read your post. My husband had no idea what was making me so happy. Thanks for the update!
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Big week about to start. Nervous!
I have my port put in and I meet with the cardiologist and first chemo on Thursday.
I bought a wig yesterday. I ponied up for a human hair wig. It's nice and soft, but now I need to take it to my hairdresser to style since it's not cut or styled yet. I'm anxious to get it styled and done before my actual hair starts going. How long after starting chemo should I be buzzing my hai off? It might take me a week to get a hair appointment...
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Flower68, I'm sitting here dancing for you!!!!
edwsmom, it depends on your course. You're on TC, so I'm not sure. My MO nurse said to expect it by day 16 with AC, so I went after it on day 8 rather than wait. I didn't want cancer to be the boss of me.
For me, I thought it would be more traumatic to see huge clumps fall out and THEN shave it, plus I'd lose the chance to donate those clumps.DoingwhatIhavetodo--I understand exactly what you're talking about. I think that, given the recurrence after mastectomy, your feelings make absolute sense. I'll be interested to see what the tumor board has to say and what you and your MO decide.
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hi all, been asleep for 2 days! I had the neulasta delivery kit and it was easy. The kids enjoyed watching the level go down and turn solid green LOL! A little achy but no real bone pain, took claritin and tylenol so it must have helped. I too feel that my tumor is smaller and the pain is gone. Definitely helps me push through the extreme fatigue. This morning was pretty uncomfortable with nausea and D but I took my meds and it's better now. I'm glad the kids are home from school tomorrow just so I have another day before I have to drive them around.
Grey, welcome back, we're always here for you!
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I made a compelling argument to my MO. I am glad she understood where I was coming from.I am fairly young 49. The tumor is grade 3, I recurred on Tamoxifen. I was happy when I didn't have to do chemo and radiation, but always had the feeling I needed to do more than the mastectomy and Tamoxifen.
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