Starting chemo February 2018
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Thanks Jo!
Cbok, I think if you are “triple positive” (both hormones and HER2) that you take both the herceptin and the hormone blockers. At least I know that’s the plan my onc has for me.
Hope everyone is doing ok today. I made myself get out of the house and take my kids over to my moms this afternoon...it helped. Otherwise I just sit here and stew in anxiety about anything and everything I can imagine.
Not sure who all here might familiar with this story from the Bible (no judgement from me either way) but I can’t stop thinking about it...it’s in Mark chapter 9. A man’s son is possessed with an evil spirit and he says to Jesus, “Please help him if you can.” And Jesus says, “What do you mean, ‘If you can?’ Anything is possible for one who believes.” Then the man immediately says, “I do believe! But help me with my unbelief!”
Ha! Man if that ain’t me. Constantly trying to believe I’ll be ok but always fighting with my mind.
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ColleenS80...Constantly trying to believe I’ll be ok but always fighting with my mind...EXACTLY how I feel! You hit the nail on the head ... I need to add this to my prayers “I do believe! But help me with my unbelief”. Thank you for this!!!!
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Hey, my sisters, I finished chemo today!
My center treats all stages of people, including stage 4s and therefore they don't have bells and don't do a big tada thing as that really wouldn't be appropriate. So it was a low key affair, just like any other chemo day really.I've already gone for a walk with the dogs and now I'm having dinner. My nurse told me that since my neutrophils are again super slow (I just barely squeaked in to qualify for chemo today) I have to be super careful still for the next 2-3 weeks and if I get a fever I would still have to go the ER.
Thank you all for the support & cheering on
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moth- congrats on finishing chemo. I'm glad you're managing to squeak through with your neutrophils. Now it's time for your body to start healing. How's the new pup? I've already forgiven Ted the Retriever for knocking me off my treadmill last week. Sometimes to be truthful, I was never angry with him. These sprained and broken toes have really slowed me down.. That's okay I'm working on strengthening and using my balance ball. I cannot believe I've already finished 11 radiation treatments. So far, no side effects from radiation. I don't know if this is similar to chemo where there's a cumulative effect. I do use a prescription cream 2x daily my RO prescribed. It's supposed to alleviate redness and itching. Take care of yourself.
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calee so glad it helped you!
Moth-congrats! Such a nice feeling!
Ladies I got my path report today and saw my surgeon. Both appointments upsetting.
Path report showed cancer still in 2/13 nodes, and overall “no definite response to presurgical therapy.” So basically I went through harsh chemo and targeted therapies and it looks like my cancer barely responded AT ALL! My onc said that worried her bc most people in my place have a good response to these treatments. So she has a call in to a colleague at Vanderbilt to ask another opinion for best approach going forward. She wonders if we should focus on the hormone therapies as maybe my cancer is more hormone driven than her2 driven. But im glad she’s getting another opinion. I may end up having to go to Vanderbilt but that’s fine, I will do whatever I can.
After this apt I went to see my surgeon for my lumpectomy post-op, and she was worried about my path report too, but for a totally different reason I hadnt even noticed. She said there were actually three areas of cancer instead of just one as thought. And although they still got clean margins, she worries that if those places didn’t show up on MRI, there could be other areas in the breast that aren’t showing up as well. So now she thinks it may be better to go back and do a mastectomy.
She texted my onc while I was there, and the onc didn’t seem as concerned about the possibility of other areas as she did.
They are all having a tumor board meeting next Tuesday 7/31 and will present and discuss my case, then let me know what they think I should do. This is the day before I’m supposed to go back to work (I’m a teacher).
This would almost be funny if it weren’t such a disaster. I can NOT catch a freaking break!!!!
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Hi everyone
Catching up with all the messages. Colleen it must be hard to deal with your last news. I hope they can find a consensus. I will be thinking about you!
Moth, congratulations on finishing chemo. I wish you the best outcome possible for your biopsy.
Some of you seems to have had a hard time recently with different issues. I have also been frustrates more than once in the past and I am known for my quick temper .
I have taxol 11 this Friday. I believe that I won't accept one more. It is getting really uncomfortable to walk and put shoes on. I am also suffering some incontinence and my taste buds were way off chart to my liking. My major concern is how my neuropathy has evolved and as it doesn't decrease quickly after treatment I am not willing to suffer more than what I am enduring now. I had my MRI post chemo last Tuesday and I see my surgeon next Tuesday. I hope I can fix a date for my surgery.
In a positive note, I have found a French teacher job for next school year. I am so happy but I am freaking out at the same time because I will have 3 preps everyday, I will miss some days for my surgery at the beginning of the school year which for me sounds unprofessional and i am not comfortable with my missing school days and then the school is from 9 to 4 with around 1h traffic commute and I don't know how I will fit radiation as it doesn't seem that there is a center opening early or closing late in the area. All these contingencies are driving me nut...
I am going to try to sleep some now.
Take care ladies!
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collette- your news is upsetting. You have been through so much with chemo. How were they able to determine from the pathology report that chemo was not definitively effective? You did mention that your MRI missed some of the tumors. Please forgive me I still struggle to understand the ins-and-outs of the reports and scans. My thoughts are with you today.
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lolotte I’m worried about working school schedule around treatments as well, I do hope we can all figure it out.
Jo-my tumor was the same size when they took it out as it was in my first MRI in January. And there was still a ton of cancer in my two lymph lodes. So that’s why they said it didn’t really look like there was a response. The tumor should have at least shrunk and there shouldn’t have been so much left in my nodes. And looking at the MRI images I guess they assumed it was one tumor but when they actually got in there it was three spots. So the surgeon worries there are more that have been missed by imaging.
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lolotte I’m worried about working school schedule around treatments as well, I do hope we can all figure it out.
Jo-my tumor was the same size when they took it out as it was in my first MRI in January. And there was still a ton of cancer in my two lymph lodes. So that’s why they said it didn’t really look like there was a response. The tumor should have at least shrunk and there shouldn’t have been so much left in my nodes. And looking at the MRI images I guess they assumed it was one tumor but when they actually got in there it was three spots. So the surgeon worries there are more that have been missed by imaging.
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Ugh Colleen, that's a kick in the teeth. This must be so stressful. One thing that struck me was that I was told that chemo 'works best' on Grade 3 triple negatives. It's not that it doesn't work on the others, but the responses are much smaller. I'm wondering if being a Grade 1 is the thing that affected it. Since chemo works best on the cells that replicate quickly - like hair, nails, skin and grade 3 tumors, maybe yours is just a very very slow grade 1. And it would still have worked on any individual cells that might be floating away, but not on a measurable level of a tumor because 1-2 layers of cells wouldn't really be something we could measure, kwim?
Surgery is the treatment that brings you the biggest bang for the buck in terms of survival. Have you run the lifemath & predict calculators on yourself? Grade 1 tumors have really good outcomes even on just surgery alone so I hope that encourages you. That would suck if they end up recommending to go back in for a mastectomy. So stressful. but maybe the bs is being overly cautious and the tumor board will not recommend it. Otoh, I imagine you'll want to go with whatever brings you greatest peace of mind. (((((Hugs)))) This whole thing sucks.
lolotte - oh I'm sorry to hear about the neuropathy worsening! Were they giving you reduced dose treatments or did they keep you full dose?
When I had the first twinge of my mine moving from grade 1 to 2 that's when I really freaked out because it's one thing to lose a year and lost your hair and maybe lose chunks of or a whole breast, but losing mobility and dexterity potentially forever was just a different ball game in terms of quality of life. When you're this close to the end & had over 90% of the dosage, dropping that last one might not be a big deal really.... Congratulations on your job! Post cancer life is just around the corner!jo - glad radiation is treating you well so far & Ted has been forgiven! Your poor toes tho - do you have to soft boot or did they just tape them to each other? Olive is a love but still a naughty pup and learning things like "we don't eat the couch"
Luckily it's a couch I wanted to replace anyway but I don't want to do it right away as I don't want her to eat a new couch....so I think maybe in Nov or Dec when she's matured a bit more lol. She's also got weird skin issues which are probably allergic dermatitis and I'm hoping it turns out to just be a bad flea allergy because I'll never be able to control what she puts in her mouth as she's a little hoover and my neighbourhood & picks up everything off the ground. Knowing labs the 'leave it' is going to be something we will be working on for her entire life... I know some people who end up basket muzzling their labs but that is something I hope to not have to do. I've been a bit disappointed in MYSELF because I've been to tired to do as much focused training with her as I want. She's been learning stuff but hasn't been getting as much from me as she deserves. I really hope that after the first week of pfc fatigue, I can pick up the pace and start a cram session of summer school with her.
oh I forgot to mention that my oncology people want me to bump that biopsy further down the road. Because my neutrophils dropped to 1.1 on Wed they're figuring they might be well <1 next week so they think I should wait 14+ days before doing it. I'll be calling this morning to reschedule.0 -
colleen- thanks for the clarification. Hopefully your positions will all agree on the best treatment options for you. I can appreciate how stressful and anxiety-ridden this whole process has been for you.
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thanks jo and moth
Moth the lifemath calculator says I have an 80% of being alive 15yrs out, if I read correctly. That seems low compared to what I've been told otherwise. Or maybe I'm just too hopeful lol. I've been trying to do the predict one for days but the website appears to be messed up and won't let me get to it. Thanks for your thoughts about the chemo not working. I did wonder if my grade one status had something to do with it and what you say makes sense. I appreciate the encouragement!
Also, what’s your biopsy for? Hope it goes well
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Colleen - predict 2.1 is working for me in chrome. I guessed at your age & got 83% for surgery only at 15 years out; 90% with chemo & herceptin. If you want, you can pm me your details & I'll send you back the screenshots of the result.
Be optimistic! Might as well! I hope the feb group will be checking in for many decades until we're really super old biddies and sharing pictures of our trips0 -
thanks so much moth! I don’t mind sharing I’m 38, but let me know if you need any other stats! I appreciate it <
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Colleen - I also need to input
ki score. Options are negative / positive / unknown (positive is defined as more than 10%)
detected by screening / symptoms / unknown
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Ki-67 was 5-7%, so I guess that’s negative? And it was discovered by symptoms.
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ok, I sent you a bunch of screen shots by pm - first the input screen & then the 5, 10 & 15 year stats
Friends, I'm signing off. We're heading out camping for the weekend by a local lake. First camping trip with Olive. I hope she doesn't eat the tent LOL. See you later!
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Thanks a million! Have a wonderful trip!
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Hey, I'm back....and I'm watching my temp
It keeps hovering in the mid to high 37s. 38 is our cutoff for going to the ER. Geeez, I really do not want to finish chemo with one more admission for febrile neutropenia...0 -
moth- good luck
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thx jo! Still home, never did go to er because it turns out my two oral digital thermometers are wildly inaccurate so if you get a reading you don't like, just repeat it in 30 seconds and you might get something different. I'm not kidding - the range of numbers was crazy. I was getting 0.3-0.5 C spread between readings & between the two thermometers - different brands, both good quality from a proper drugstore but one would say for example 37.7 and the other would say 38.1 Well, 38C is technically our cutoff but really, how can you trust these numbers, esp when if you repeat minutes later, you get completely different numbers.
I was pretty sure I was not sick, just having an inflammatory response to the chemo & neupogen shots. I've been running low grade fevers for weeks and I have zero symptoms of infection so I had a bath and went to bed and woke up with normal temps. Bet by tonight it will start hovering at 37.9-38.1 again though.
I've cancelled my appointments for today though. I'm so tired and I'm pretty sure my neutrophils are in the gutter since they were just borderline for Taxol 12 last week. I'm going to netflix and try to put away a bunch of paperwork. I swear I've gone to digital billing for everything and yet still crap shows up in my mailbox which I then have to deal with & file...plus all the medical records stuff.0 -
How is everyone doing? Are we all done or almost done? Are people back at work/school/life and adjusting to life after active treatment?
I still haven't heard when I'll start radiation. I'm supposed to be going to back to school in September so these two things are kind of looming ahead of me.
Hey, forgot to mention - I ended up having to move the appointment for my mammogram guided core biopsy (on my supposedly healthy breast which showed something weird on the mammo in June) because the oncology team wanted it further out from my final chemo to reduce risk of infection since I'm still so neutropenic.So instead of this Thurs, it's on Aug 8. Ugh, kind of a long wait & then I'll have to wait for the path report
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wow, just read everything since my last post. A lot of sadness, anxiety, side effects, tests, results; I feel kinda sorry I haven't been around as support. Since I read 4 pages worth, I apologize for not mentioning all this individually but I've been having memory issues and the thought of scrolling back to mention you all and what you're going through is daunting. Just let it be known that I am: groaning, sighing, agonizing, relating and feeling for all of you and the post chemo issues.
Many of you are now going onto surgery. In my case I had already had surgery before chemo, as it was the surgery and full tumor biopsy that made the oncologists suggest chemo. So I am essentially done which is a whole other thing. It can feel very disorientating when after a year of being poked and prodded, suddenly they say, ok you're done. But, I am soooo lucky, Calgary Alberta has a clinic called the Breast Cancer Supportive Care clinic with doctors that do only breast cancer patients. They are helping me navigate back to work and back to health and are wonderful. Started by a doctor that had breast cancer and found that there was a need for doctors trained to work with breast cancer patients. 70% of their operating costs come from fundraising. The service they provide is amazing. My first appointment was 2 hours long, and each one since has been about an hour. Feeling blessed in that.
An update on my amnesia, I have not had any recurrence however my brain seems to be having trouble keeping recent memories and I sometimes get confused about what I have or have not done. I don't think others really notice as it's more going on inside my head and not really obvious as confusion on the outside. My biggest fear is early onset alzheimer's as my mother had it and it started in her late 50's. But I'm living it one day at a time for now and trying to not "go there". I have a EEG scheduled for this week to see if it might have been a stroke.
I feel you all who are now experiencing neuropathy, me too. Started last week and it was waking me up out of sleep. I would wake up with trigger finger on the one hand and now I have two trigger fingers, one on each hand. The oncologist took me off the FEMORA (that's the AI drug I'm on) for the time being until I see him next and I'm basically managing pain with pharmacy grade Neproxin.
Again, still feeling pretty good otherwise. I went out and bought myself an electric mountain bike and that has been making my days super enjoyable. The dogs have learned to run with me on the single track trails. They have to stay on leash as being close to Banff National Park, we have very strict on leash rules. But better I crash because they are tied to the bike then be eaten by a Grizzly bear because they chase him back to me. lol.
Lolette, I sure am happy for you that you got a teaching job. Bien faite et je suis pas mal certain qu'ils vont te laisser travailler a mi-temps pour la duration de tes traitements de radio. Mais je ne suis pas toute a fait au courrant du système americaine. I will watch for your news.
Deb, good luck with all the surgery and getting all the left over cancer, I agree with others it's all the treatment put together. I'm so sorry that you have to go through more and more stresses. Someone aptly said, what a kick in the teeth. I'm here for you.
I know there are others I want to reply to but the scrolling is making me squirrelly. Just know I'm listening.
Laurie indahood
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laurie- I am very happy I had my surgery prior to chemo. I'm half finished with my radiations. Two and a half more weeks and it's over with. Then I will continue with herceptin and perjeta every 3 weeks until the end of February. It's okay. Radiation has been without complications. I hate waking up at 6 a.m. every morning for my radiation treatment though. I leave early because of traffic. If I leave a half hour later than I'm stuck in traffic for an hour. I would rather arrive an hour early and spend that time walking.
Your situation with your memory loss is very scary. I'm place you did not have any more episodes with the memory loss. It is disconcerting though when you're searching for words or phrases and you're not able to find them. I was at Banff National Park approximately 6 years ago. I spent five days hiking. I loved every minute of it. What a beautiful area.
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Laurie- I hope the issues with your memory resolve. So scary. Let us know how your tests go.
Jo- I'm on a similar timeframe for treatment with you. Just one week ahead. 8 radiation treatments to go and then the rest of the year on HP. I'm so ready to be done and I only have a 10 minute drive! I don’t know how you do it!
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Laurie- Hang in there.
Rockcityy and Jo6359- How many radiation sessions did you have? What SE have you encountered. I have a simulation appointment on Monday.
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rockcity- my drive is only 20 minutes if I leave by quarter till 7. If I wait until 7 a.m. my drive is almost an hour. Rush hour traffic ugh. Like you I'm looking forward to being finished.
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Colleen-love that verse. Me too sister. Fighting it out in my mind.
Laurie-your memory loss sounds so scary. I hope it was a one time thing and you never have that happen again. What is an electric mountain bike? That sounds cool. Is it something where you can pedal if you want or use power when you don't?
moth-I hope your numbers improve. I'm sure they will soon and you'll get to put that behind you for good.
I started radiation Monday. The first few times were a bit scary to me. It's the least invasive treatment I've had but psychologically it was difficult, each time has been easier. The radiology staff have been wonderful. My RO is great. I am in a different center than the one where I went for chemo. I like my MO but the environment at this center just feels better than the other. I'm getting a total of 33, 28+5 boosts They told me to use moisturizer 4x/day. They gave me a list of approved creams and I got Miaderm. I am not a fan of the stickers they put over the sharpie marks. Oh well.
My neuropathy has been improving. Fingers/toes are still pretty numb at the very tips but it seems less than it was. I get the pins in my arms and legs when I stretch but it's not that bad. My fingernails are still a disaster. All but 3 of them have at least partially separated from the nail bed.
Do any of you have intentions of making lifestyle changes to be healthier or to cope with everything? I am really trying but I find it difficult day to day to stick to best practices. I just found out about the YMCA's Livestrong program for cancer patients and I intend to do that program and get the year of free membership.
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Laurie, I'm glad you checked in to let us know how it's going. Sorry to hear you're still experiencing odd memory symptoms. I hope the EEG gives you some answers. That breast cancer clinic for survivors sounds great.
guys, I *almost* don't know what to do with myself today - thursday has been chemo day for SO long! I have a set task list that is always there in my daytimer and google calendar - about packing my bags with all the things I need, packing snacks, making sure the dogs are all taken care of before I leave the house .... Instead, today I think I will empty out my chemo backpack and wash the blankets I used to take there and put it all away. My son said last night that he thought today is really when it would sink in that chemo is done; I think he might be right.I'm reclaiming Thursdays!
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Insideout2- I have completed 23 of 30 radiation treatments. 25 whole breast/ axilla/clavicle and 5 boosts. The boosts are only to the lumpectomy scar area. So far the main side effect I am having is redness and itching mainly under the breast. It’s not bad and just recently started. Occasionally I feel a bit fatigued and try to get a quick nap or an extra hour of sleep at night. This also just started recently but I’m now almost done. Compared to chemo, this is way easier! Each treatment lasts only a few minutes. You will spend a lot longer in simulation. I know some people have stickers to help guide the treatment area. I do not. In simulation I got 4 tiny freckle size tattoos. That was not fun but quick. I guess I will never be one to tatt my body. I suggest get your skin as moisturized as possible and keep it moisturized throughout your treatment. My skin is pretty fair. The radiation ladies figured I would burn more easily but my skin is holding up well. My friend normally has a deep tan. She had a lot tougher time with her skin burning and oozing. You just don’t know I guess.
Cbok- glad to hear that the neuropathy is improving. Hopefully it will soon resolve entirely. I guess your nails just need to regrow, but they will.
Moth- what a great feeling to NOT have chemo. Congratulation and let the healing from it begin
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