Stage 2 Sisters Club
Comments
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Mjsgumbas - thank you for checking in. PET was clear! They however keep looking for sources of my pain and my boob revision has been placed on hold. What concerns MO is my multifocal/multicentric bilateral cancer status that has an elevated recurrence risk aggravated by my family history. I'm going about life as usual. In fact, I have been super busy with trips and out-of-town visitors - reason why I stayed away from reading/responding posts. I do have to rely on pain meds some days. I've been thinking about your friend, hope she is doing well.
Welcome to new members! My heart and solidarity hugs go to those undergoing chemo this summer. I was going through that this time last summer and this forum was my any-time access to great people and good information. We are here for you!
Hugs, Nisa
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Glad the PET came back clear, Nisa. Hope they can get to the bottom of your problem ASAP & that it will be something stupid and benign that can be easily dealt with, or better yet, just goes away on its own!!!
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Thanks Ruth! I had a Sodium Fluoride (F18-NAF) PET/CT bone scan specifically looking at my spine where my MO was suspicious of mets. Such a big name to look for small things in small bones! Another test I passed with flying colors was a fall a few weeks back. Told doc I don't need a bone density test this year
Bones seem fine despite Arimidex. Must be the power-walk/jog 5k exercise I have been doing 3 x / week thanks to Claire's and your inspiration! Hugs 0 -
Nisa, what prompted your MO to suspect mets in the spine? Are you having pain? I am having upper back, lower neck pain. It feels like sore muscles and started with tamoxifen. I should probably have it looked at, but I a just so,glad to be done with all treatment and feel,somewhat like myself again.m I am glad you passed your scans!
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Was at the hospital this morning getting blood drawn and antibiotics, again. Thought I was feeling better, but have some dark brown phlegm in the morning now. Blood test came back as counts very low. It took an hour to drive home. One of the ER doctors called and almost has me drive back. Instead I have to call the oncology team tomorrow.
Bippy, thanks for the compliment. This board helps me keep a good attitude. I think we all have our bad moments. I'm no different.
Nisa, glad the PET came back good.0 -
Oh blah, missmercury, let us know what they say!
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You ladies really do keep me positive. I said a prayer for you all.
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missingmercury, are you the poster with the cough? I still have a cough even after taking nyquil and drinking tons of water for the past week. It isn't as bad, but lingering and I have some pain in my sternum when I first lay down.
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A persistent cough is on my list of symptoms to report to your MO. Good luck.
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Nisa - glad your scan was clear!!!!! Hope they figure out what is causing you pain : ( and that it isn't a big deal!
Missing - hope you feel better soon!!! Think about you often!
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Homemom, yes. I have reported it, and let them know I am not producing phlegm. I am on antibiotics. The ONC doesn't want to take any chances since my counts are low this week.
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smrlvr - that's a lot on consonants in your name my friend - can I call you SM?
Yes deep and dull pain is located in upper left quadrant of my back and travels toward left shoulder and side of neck. It is the pain progression that lead to my MO's recommendation to check it out. If your is progressing, be sure to inform your MO at next visit. Good luck with that, pain is no fun.Missing - hope you are getting better. Chemo is bad enough to also deal with complications.
Hugs, Nisa
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Thanks missingmurcury - It is almost gone now, just a little clearing of the throat every now and then and a small cough a handful of times during the day. I have been sleeping better and that may be helping. I will update my MO on it. I started coughing just before the CT, so I'm sure it isn't anything else
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My goodness this sh*t is everywhere... Just found out a dear family friend learned she has BC & is scheduled for a lumpectomy Friday!!!! Aaaaaahhh - I just can't believe how many people join the ranks - its insane! She is in a very early stage they believe - thank god! But its just too common! Sorry for venting - but thanks for listening! Her daughter (my age) is a mess & totally freaking... Its so hard to find the words to comfort people you love!!
Hope all are doing well & missing - hope you are feeling better!!!
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MJS - I am so sorry about your friend. You are going to be of great help to her and her daughter. I too have a friend recently diagnosed with stage 4 cancer but not BC. Awful, awful illness. Hugs
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I am approached constantly by people who see I am in chemo and have either been there or a family member has. MJS sorry about your friend.
Of course I feel better now, I have chemo next Weds.. Last round of a/c. Then a heart scan. Then on to t/h.
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Especially since my diagnosis, my heart just sinks when I hear of another friend or acquaintance who is joining our ranks. I suppose it is because we know what lies ahead for them
. We really can be a source of information and support. The listening ear of someone who has 'been there, done that' was what helped me most during that dreadful time.0 -
Thank you all!
I agree Ruth - it was "easier" being here with all of you to lean on. It really made a difference to talk to people who get it!
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Ok ladies, question for a friend! She was just diagnosed, Stage II, aggressive, ER+! Her MO is saying chemo, once every 3 weeks for 9 weeks! Not sure exactly what she will be getting, but this seemed a little conservative to me! Has anyone here every just had 3 treatments, each 3 weeks apart! She will also be getting the rads at the end of chemo! She has already had a lumpectomy!I would like to hear how others were treated! Thanks
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nettie - could it be 4 treatments? If you had the first one, then 3 more there would be an elapse of nine weeks from first to last for 4 tx. If she is getting TC, many have 4 vs 6 treatments of TC, which is dosed differently from the way you would have received AC-T.
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Very possible, thanks! I will have to ask her! I'm just so worried for her because another friend used the same doc, same treatment protocol, was dx same time as me Nov 2012 and she died a couple of months ago! I just don't have a lot of confidence in the dr she is using, but if she has confidence that's all that matters!This was what she sent to me "1 treatment every 3 weeks for 9 wks followed by 6.5 wks of radiation."
I was also told by my Doctor at MD Anderson that they are not seeing good results with the every 3 week treatment and hardly ever use that anymore! Just worried for a friend!
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Nettie - I am sorry about your friend. HER2+ folk have the wonderful Herceptin drug which has been called "the miracle drug" which I hope helps her too! The chemo protocols are not extremely strict and can vary depending on patient response. I was initially in for 6 rounds, then 4 rounds, and ended up with 25% less than 4 rounds as my SEs after the 3rd round suggested my body was having trouble eliminating toxicity. A year later all SEs are gone - hooray.
SpecialK - can you speak to the dosing of chemo? I know the amount is weight-related but how is it determined to combine TC or split? I heard patients ultimately receive the same amount whether it is pread out or close together. Is all this accurate? What's the thinking behind spreading out across more weeks? Thanks!
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Neither of my friends were/are Her2+! The one who passed, started with Stage II IDC, then while in treatment (once every 3 weeks and 6.5 weeks rads) she developed IBC in the same breast and the local docs started treating her for shingles and by the time they decided they should biopsy it had spread like wildfire! I will always question had she been at a large cancer center if her treatment would have gone differently, but we can't spend a lot of time second guessing.
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Ohhhh sorry Nettie, my mistake I misread the ER+ for HER2+. What a sad story. I too had a close friend passed away from BC just 2 months after my diagnosis. She hid from me her mets to liver and brain to protect me. She initially had stage II, did all the "right things", went in remission for 3 years, developed bone mets, and then died leaving behind a devastated family and many friends.
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For stage 2 estrogen positive ladies without positive nodes; 4 rounds of chemo (either every 3 weeks without a Nuelasta shot, or dose dense every 2 weeks with a Nuelasta shot) is pretty much standard of care, rads always goes along with a lumpectomy, and anti-hormonals follow it up. If she had been triple negative, more chemo would most likely have been in the mix, probably positive nodes would add more chemo too, and of course, if she had been HER2 positive, Herceptin. You don't want to be under-treated, but you don't want to be over-treated either, because each treatment has risks of its own.
A good friend of mine was diagnosed at about the same time as me, same stats, same treatments, everything......she had a recurrence 2 years later and has since passed away. I think about her a lot, and how just plain lucky I am (there being no other explanation). My take on it is that you should do whatever is medically recommended (and whatever lifestyle changes you need to make too), and after that you just have to leave the rest to God, or fate, or luck......at that point, it's out of our hands.
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Nettie, mine are once every 3 weeks for 4 rounds of A/C, but then I have weekly T/H before rads. I had one positive node. I am treated at an awesome VA hospital and trust them. Yes I am scared also, because this is cancer and it has wicked ways that are still being discovered.
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Dear Sisters, I noted some of you going through chemo are having issues with your mouths. I didn't do chemo but as a former dental hygienist I did see patients going through chemo. It's not like you don't have other issues going on but please do consider the Biotene mouth rinse or spray as well as a good fluoride rinse. Dry mouth leads to decay and bone loss. Bone loss is very much an issue when taking Letrozole. Hope I didn't step on toes but I felt an obligation to jump in here.
((((HUGS)))
Cakes0 -
I used both the Biotene toothpaste and mouthwash (on the recommendation of my dental hygienist).....both really helped, and I liked the mouthwash so much that I still use it today!
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I too used Biotene during chemo last year - following a recommendation on this thread. By day 3-4 post-infusion, my tongue would turn quite whitish. And 2 days later, it was back to normal. I can't say what it would have been like without Biotene, but I liked it so much I still use today. Great suggestion Cakes!
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I use both the biotene mouth wash and toothpaste. My dental hygienist told me about it before I started chemo. She gave me coupons
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