Best Of
Re: How has normal, day-to-day life changed for you after diagnosis? Share your “different normal.”
This site needs more promotion. So much traffic was lost when the site was updated. Covid might have been what had so many join and post. I know the need for this site is important.
katg
Re: Starting chemo in October 2025? Let's support each other here!
Hi Everyone, This is a quiet group so I hope it means you’re all weathering chemo ok. In case my experience is helpful for anyone, my 2nd infusion was a similar experience to the first. In both I used ice packs on my hands and feet. They were really very cold and eventually got a little painful so I had to take them off about half way to give me a chance to warm up a bit before putting them back on. So far I have not had any neuropathy. (I did not elect to use cold caps, and predictably lost my hair.) I have had some weird sandpaper-y feeling in my mouth and tongue about a week after infusion (which is going away) and definitely a blunted sense of taste, that has persisted. Food enjoyment is not the same but I haven’t had any nausea. Being able to get a good night’s sleep makes a huge difference in how I feel. My energy is slowly coming back and hoping this is the case for the last week+ before my next infusion. I hope someone can share whether their infusions seemed to all be similar side effects or if some side effects accumulated/ got worse towards the end. Hang in there everyone! I wish you the best with your treatments and recoveries.
Re: HERCEPTIN and/or PERJETA Threads
Well, my last signatera test for 2025 is….NEGATIVE!
And all the gynecological testing shows nothing concerning, what is there is benign.
Now I can relax and enjoy my holidays. I've got no medical appts til December (😣) but one is dental and one is dermo….so not so bad. Back to oncology in January.
Hope all of you are doing well here ♥️
olma61
Re: My Husband, My Life, My Love, My Family, My Cancer
@shanagirl In your pocket for Ro tomorrow and getting started with new plans. Hugs❤️
@irishlove UGH wth with the clerical errors , cmon people get it together! Agree, being labeled with diabetes is a big oops and needs correction. I hope an another angel flies by and gives you help with this. Stay warm..brrrr , chilly for Floridians!
@mara51506 Wrapping you in a big virtual hug. I hate to hear you're sad and I hope you have another heart to heart conversation soon with DB. When is your birthday?? This week?🎂
@intolight Hope you get rid of your cold soon and are feeling better for scan day. In your pocket for Tuesday and in my own pocket for CT on Friday.🤞
Wedding venue tasting went very well, everything was delicious! We all went home with plenty of leftovers for dinner tonight. Holding my breath for CT on Friday. I'm praying for stable as I don't want my DD to worry about my health during her happy moment.
Praying for a nice smooth week for all here, waving hi and throwing kisses to all you beautiful ladies here❣️
cookie54
Re: Brain Mets Sisters
Paula, hugs from me as well. Both Lita and I have had treatment and can offer perspectives once you have more info. Feel free to PM me too for moral support and help as well. We brain mets gals/guys are quite friendly and supportive when you need us.
Re: Older Women Treated With Hormone Therapy May Not Need Radiation
Hi Elem:
With hormone receptor-positive disease (ER+ and/or PR+), when you meet with the medical oncologist, you will probably discuss "endocrine therapy" (e.g., tamoxifen or an aromatase inhibitor ("AI")). These drugs are in "pill" form.
Be sure to ask the medical oncologist about the HER2 status. HER2-positive disease is treated quite differently from HER2-negative disease, so this result is critical information with respect to chemotherapy and HER2-targeted therapy.
If you have not already done so, be sure to obtain copies of the pathology reports from all biopsies and surgeries, along with any addenda or supplements with ER, PR and HER2 test results for your review and records. It is best practice to confirm the information you receive with the underlying documents (with your name and actual results).
As far as radiation and the original post in this thread, I think that this is the related news feature (dated May 18, 2015). The Moderators should have included a link to it in their post.
Feature: http://www.breastcancer.org/research-news/some-treated-w-hormonal-tx-may-not-need-rads
Liu (2015) Study Publication: http://ascopubs.org/doi/full/10.1200/JCO.2014.57.7999
Bellon (2015) comment: http://ascopubs.org/doi/full/10.1200/JCO.2015.61.2069
The title of the feature is rather misleading, and the study had significant limitations. As a result, this study was not seen as a practice changing study. Further research to substantiate or validate the findings is needed before it is implemented in the clinic, as noted by the authors:
"However, omitting RT and using intrinsic subtyping and clinical factors is a substantial change in care. The breast cancer community would likely require additional prospective evidence before this becomes standard of practice. To validate this observation, a prospective, single-arm clinical trial open to women age 55 years or older with pT1N0 grade 1 to 2 luminal A breast cancer has begun in Canada. . .
. . .Further studies may validate the exploratory finding of a low-risk group of postmenopausal women with early-stage luminal A breast cancer group who may be spared the inconvenience and adverse effects of breast RT."
Other clinical trials regarding the omission of radiation therapy in older patients have used higher age cut-offs (e.g., PRIME II, age 65 or older; CALGB 9343, ≥ 70 years).
As of this date, the National Comprehensive Cancer Network (NCCN) guidelines (Version 2.2016) provide that breast radiation therapy may be omitted in select patients ≥70 y of age with estrogen-receptor positive, clinically node-negative, T1 tumors who receive adjuvant endocrine therapy (category 1). Patients should seek case-specific, expert professional advice from a Radiation Oncologist to understand whether this is a reasonable option for them.
In any event, when you meet with the Radiation Oncologist, do not hesitate to request a personalized risk benefit analysis. Inquire what clinical and pathologic factors weigh in favor of radiation therapy in your specific case. Ask about your estimated risk of local recurrence, and the estimated absolute risk reduction benefit you would receive from any particular course, which must be weighed against the risks. With some lower risk disease, shorter courses may be an option.
BarredOwl
Re: My Husband, My Life, My Love, My Family, My Cancer
Ah @mara51506 I wish I could give you a big hug. It darn well hurts with the lack of family support, even with a phone call initiated by them. I think we all should have nurse navigator to handle those questions. We should not have to guess, suppose, or fret over proper instructions. If portals are suppose to be the answer, well I beg to differ. It took a week to get a response last time I used it and that was only after I posted the second time.
Our weather is going to plummet from 79 to 29 withing 24hrs! DH says he might have to wear a t-shirt. lol.
Best wishes to all for good scans, stable "Mabels" (borrowed that from a prior breastcancer member) and warmer weather.
Re: Can we have a forum for "older" people with bc?
Teka, it is a tie!! We also had snow last night.
I haven't gotten much done today. However, it is Sunday.
I left a book-club several years ago because of relationship problems with another member. I had a talk with that person a week ago. I understand my part in the difficulty, and I am interested in returning. I don't know, but something is happening. A wait and see kind of thing.
I am getting a bit more lax with my rehab exercises, but I will still get my five sessions for today. A nap and Mass got things out of kilter for the 10, 12, 2, 4, and 6 schedule. I want to get at least half an hour resting between sessions. Oh, what problems!
mcbaker
Re: Who's starting Radiation in November 2025? Let's gather here to share!
Hi everyone, I am going to be started full breast radiation everyday for 4 weeks and I have some questions. I am hearing difference stories about being able to be around kids during my radiation or having to take time out of work and I didn't know if anyone has gone through the same and knew if any of that is true and maybe help guide me on what to expect.
I do plan on asking my doctor when I see her for my Stem visit on 11/20 but I didn't know if anyone here could help me on what to expect.
Thank you!
Re: My Husband, My Life, My Love, My Family, My Cancer
@irishlove Glad you go assistance with your meds and of course they need to get your charts corrected as a necessary medicine could be withheld with that diabetes notice thinking there would be interaction to a non existant med,. Hope that clears up for you soon.
I slept well but felt sad to the point of tears on not seeing family. I realize there is a lot they are dealing with and that I took them off the hook for groceries given Paratransit or delivery would take care of it. Decided will phone SIL one week and DB another, just a quick check in and chat instead of bemoaning their absence. Need to solve the problem a bit. Let DB know I miss seeing them, even if it is a coffee type visit but will let that thought go until I see SIL and she can tell me what she is dealing with, still does not want to say over the phone. Far as I know, if the referral goes through with the neurosurgeon, she will come. For now calls will come from me.
I did get some groceries yesterday. Got a mix of penne noodles and the queso bowl, warmed yesterday, let cool and they are in a container. Got a pound of chicken in the fridge as well, it can be added to everything. It is halal chicken but tastes the same to me. I have until wednesday to finish them up.
For meals, they will all feature the chicken I cooked yesterday so thinking about microwaving an egg and some beans, and some chicken let that cool off and throw in the chopper with cheese, bit of BBQ chips that are too spicy as well. Then take the chopped stuff and a spoonful of the pasta and throw in a pan with garlic and butter, crank up the heat and turn off with the lid letting the flavours come together. Later have an english muffin with cheese and garlic spread with a mini pizza OR meat pie. Once I am done with the chicken, will heat up frozen burger, grind it and use it as an extra topping for stuff. Chia seeds are in meals as well, always soaked and no more than a tbsp at a time. I will post if anything is really good tasting.
House needs a good sweep, been terrible on getting floors done, plenty of time for that, still got laundry and want to wash clothes and hang up in my clothes dryer, it is fun to use and quick to dry up stuff. As far as the floors, broom and basic mop work best and will use the dry function of the wet dry vac to clean up the litterbox area, a lot of litter back there that cats have kicked out, just have to move stuff out of there.
Anyway, hope all have a good day, we are supposed to get snow for a couple of days, unsure how heavy but do not care since we go back to double digits above freezing. If I had to go out this week, could simply melt snow where I think I need too. No trips out, phone call with social worker Thursday. I still have no idea what services I should claim since I am still mobile, not upset about my brain at this point. I will see. Going to phone RO office and find out if she has info because I would have thought there would be some urgency of investigation of the cyst with blood flow. I do not see RO again til Nov 27 but unsure if there is much point in seeing her without seeing neurosurgeon. Oh well, I cant answer my questions, will phone and see what the office tells me. Got to get my own questions answered.
Well, I hope everyone has a good day ahead and in pockets for those who need it, in my own pocket to get done what I want to get done as well.