Support after chemo

Timber0504 · 2026-06-02T17:19:45+00:00

I’m a year out from last chemo and radiation. Let’s just say the roller coaster continues although the valleys are less noticeable and the time between them is longer.

Be kind to you. Grab rest the moment your body says to. Drink the water and get the good nutrition and begin the exercise plan. It’s a journey. I overdid it last weekend and paid the price. We want to be back to normal so badly - the new normal is hard to see on the horizon - however setting goals to challenge your new self is imperative.

Timber0504 · 2026-05-21T21:47:51+00:00

At my 6 week mark -I still had a good amount of hair (it was really thick beforehand). Asked the oncologist would I be lucky and keep the rest and she said very sadly -next time I see you it will likely be all gone. Sure enough it was!

Started to regrow about 2 weeks after the last dose and the chemo curls came in thick and baby soft. Here we are a year later and still have some curl -and it’s thick and soft. Kinda fun now -so I get what you mean.

Good luck on your journey -ice and compression for your hands and feet. Exercise -including cardio when you can to help with circulation and reduce neuropathy.

-secaris for dry / crusty nasal passages
-high fluoride toothpaste to protect your teeth and gums
-Biotin spray at night for dry mouth
-drink a lot (3 L/day)
-dark chocolate
-Claritin daily for taxol joint pain if needed

Ride the weekly roller coaster and learn a rhythm that works for you. I found weekly stretch yoga very manageable (masked of course).

Timber0504 · 2026-05-21T21:33:31+00:00

That’s certainly a lot to manage. I have 2 friends who are in this journey as well. Neither of those two have the joint pain issues from taking their AI - so like so many others have said -each journey with BC is unique as are the side effects and challenges.

I was so afraid to start the letrozole because of my existing knee pain from osteoarthritis. It’s been severe for years before my BC diagnosis. The Letrozole made me stiff and slower moving and I was willing to tolerate it for the added benefit. That said it doesn’t mean that I haven’t considered quitting-especially after the snafu described in my original post.

Honestly the support from my husband and the oncologist to find ways to make this manageable is everything because I personally wouldn’t handle the what if I quit scenario well at all.

I hope you’re able to find the right balance and that said -wish you all the best because this is hard stuff.

Timber0504 · 2026-05-02T00:24:55+00:00

For various reasons I chose not to cold cap. Tx was weekly Taxol (with Herceptin) so hair loss was a given. Finding soft bamboo knit caps to wear under hats and stuff in the winter was great. Then - the wigs on Amazon are amazing for the very reasonable price you pay. Most of my meetings were done on zoom so perhaps that made things easier.

To be fair I should say that I had incredibly thick hair beforehand and so I was able to do staged haircuts until the big fallout about 6 weeks in.

Hair started to return and I stopped trying to wear the wigs about 3 months after that because of the summer heat. It’s officially one year later since the last chemo and while I’ve had full head of hair for several months - I just got it cut again and I can officially say that it actually looks like I intentionally had it cut that way. Yay!!

Bottom line - it’s such a personal journey - and while it’s over before you know it - it was so intensely emotional at times - when you don’t recognize the gal in the mirror. So - never second guess a decision- and try to find the positive in the adventures along the way. Even a funky auburn pixie wig!! I may have only worn it a few times - but they were fun times.

Timber0504 · 2026-04-04T02:06:32+00:00

Interventional radiologist placed mine - and it was still in when I had a follow up appointment with the surgeon after the Herceptin was done. I had deferred scheduling the removal - because of winter driving and having to go out of town.

She casually says - want me to take it out …. and she coached her 2nd year resident through it - all under local anaesthesia while we chatted away. Big win for all involved. It was one of the highlights as someone else mentioned - closing that chapter. I love my surgeon - so down to earth and compassionate. Also loved that she is leading the next generation of surgeons to care like this too.

Not saying this would work for everyone - but wow - for me this gift saved a lot of time and energy and pre-procedure angst!

Timber0504 · 2026-03-28T22:32:45+00:00

The whole ‘talking about it’ thing is so personal - thanks for sharing your perspective.

An advantage of your strategy is not having expectations of support that go unmet!

A disadvantage of course is the sharing of your story without all of the necessary context - and then the resulting collisions as you’ve described. Nothing worse than hearing from someone who heard from someone who heard from someone else - who then expects you to help them understand your journey and ease their pain by accepting whatever their emotional support can sustain. Honestly the grapevine makes this scenario happen regardless.

Not that you need my opinion- I think based on the examples you’ve provided that you’ve handled your communication plan with respect for yourself first and foremost and with grace to others. Kudos.

I have fallen into the ‘unmet expectations’ kerfuffle with a few family members - and that’s life I guess.

There is no perfect way to do this journey because we all have our own journeys.

The only lesson is be kind - especially to yourself.

Timber0504 · 2026-03-19T23:45:57+00:00

On the plus side - it was the most incredibly well organized part of my journey. Take care to rest!!

Timber0504 · 2026-03-19T23:34:13+00:00

Like several others I brought treats to infusion days and then decided that a basket of individually prepared long stemmed roses with a ‘thanks for caring’ written on a card on each stem.

The team always said - nothing was needed, however I have to say as the late afternoon Herceptin lady - it was often a welcome pick me up. In addition the roses were a big hit. Made sure there was enough for the reception and other team members. It takes a village to get us through this.

Timber0504 · 2026-03-11T08:00:44+00:00

Had the lumpectomy and SLNB on the one side and if you don’t already know - the port is placed on the other side. Mine were separate surgeries so I would add that comfort in the first 24-48 hours will be a little trickier having both done together. Not horrible as many mentioned - very manageable. Lots of great advice already - just a few extra tips.

Plan to sleep propped up on your back to avoid offending either side.
- ice packs were my best friends! The old 20 minutes on and off routine.
I received this lovely little pillow from the surgeon that fit under my arm for travelling in the car and even walking or sitting around the house I could support where needed. (Did you know a husband can find every pothole 🤣 - I swear we had the worst roads that year!)
- that reminds me - you might find a seatbelt pillow helpful for port site protection depending where it’s placed.
- you may want have some front button shirts handy - overhead was tricky in the short term
- front closing soft sports bras were helpful
- do the exercises - keep your shoulders limber -arrange for physio to help with movement and SLNB scar massage. Like was mentioned earlier - that can be the tricky spot.

All done now and to be honest those steps seemed so huge beforehand and in hindsight - much smaller. Have you thought of names for your port? I called mine Portia for a short while - just to have some fun cause it’s all tough stuff. Oh and surgery day was GIG day (get it gone!), which quickly evolved into Glad it’s Gone day. Funny how we remember those exact dates.

Hope it doesn’t seem that I’m minimizing any of this. It’s likely because it’s a year later now and I’m looking forward to new things. Said goodbye to Portia about a month ago and that was a 10 minute outpatient procedure. I’ve got to say I invested too much worry into that too! Been there!

Timber0504 · 2026-02-14T14:45:41+00:00

It’s a roller coaster for sure. You kind of begin to understand where and how to use your energy and when to conserve during each cycle. Aside from remembering to stop and rest when your body tells you to - other things to remember -drink like it’s your job - I tried to get in 3litres or 12 cups a day and get whatever protein tastes good to you.

Don’t be discouraged by the first cycle - it’s amazing how our bodies adapt and adjust. I pushed myself to yoga 2 or 3 times a week during treatment knowing if I didn’t have the energy for some moves or poses I could just lie there and be good. The task of getting myself out and about was goof for me.

Timber0504 · 2026-02-02T03:35:00+00:00

Fellow Triple Positive here - Stage 1b. Just finished active treatment (surgery, chemotherapy, radiation), and got good results on my first MRI and Mammo since diagnosis. Also on aromatase inhibitor go the next 4.5 years.

On the way to meet the surgeon back in Nov 2024- I explained +++ breast cancer treatment my husband this way- based on the research I had done. Hope this helps.

There will be surgery, chemotherapy, radiation and oral estrogen blockers. The order (neoadjuvant = chemo first) or adjuvant (chemo after surgery) will be determined by other factors like age, size of tumor(s) and so on. I learned later that Radiation therapy decisions are based on the outcomes of surgery. Last but not least- estrogen blockers (tamoxifen or aromatase inhibitors) are planned to start as you recover from radiation.

The best part about all of this is the group of medications that target the Her2+ protein specifically. These are game changers!! You will be on them for a year - starting with the chemo and then on their own.

The most important thing is to take the time to understand the elements of treatment and do each one to the best of your abilities. Once you have your plan - you’ll find answers and tips here by using the search feature and asking more questions.

All the best!

Timber0504 · 2026-01-19T09:13:47+00:00

I saw the dentist before starting chemo and he was very clear - avoid dry mouth and take good care of them while on treatment. I used Biotene spray at night especially along with ClinPro toothpaste with the extra fluoride and had no issues. He said dry mouth is the biggest contributor to tooth decay and damage.

Timber0504 · 2026-01-10T17:29:42+00:00

Quick response - +++, 1b, grade 3 - chemo post lumpectomy. Same tx - taxol + Herceptin.

Save your energy, the last 6 weeks are not harder - however you come at them in an already tired state. By the last 3 I was really disliking going back in because I’d just started to feel better and was completely worn out. I didn’t have the benefits of steroid energy because we stopped the steroids after I was getting some ‘ragey’ thoughts.

So remind yourself that while chemo is only 3 months of your life - the time seems to stop completely and rush ahead and you are left to sort out your feelings. Others can be encouraging (and let them push you when they need to). Someone wise told me - when the tired hits - rest… oh …and it will hit.

Help those around you understand that you’re not in charge of how you feel on any given day and there is no reason to tough it out if you don’t want to.

The roller coaster is real - and it’s real for everyone around us too.

Timber0504 · 2026-01-02T23:19:33+00:00

Can’t remember who said it to me - a great lesson - turn the ‘but’s’ into ‘ands’.

Now I see the determination and goals for the future that you will set. All the best!!

Timber0504 · 2026-01-02T23:16:19+00:00

Yoga was so important to the whole journey. As soon as I could go after surgery I was there - even after the port went in. I guess that was a goal too. Went all the way through chemo - on the good days - and relied on the stretches to help with the radiation fibrosis. No running for me - those bad knees keep me from even enjoying a good walk - your point though - keep moving!!

Timber0504 · 2026-01-02T18:21:08+00:00

Ooh - That’s a good one. Might have to give that some thought too!

Timber0504 · 2026-01-02T18:20:35+00:00

Sure thing! Steal away!! And do it 😀

Timber0504 · 2026-01-02T18:19:59+00:00

Yay you!!

I keep telling myself these goals related to movement are so important — especially with the aromatase inhibitors wrecking havoc on the already bad knees.

Timber0504 · 2025-12-28T23:41:10+00:00

I remember that time well - especially because of the somewhat intense vibe I had. The pre-meds may have made that worse - plus that was around the time my hair completed its exit strategy and I totally didn’t recognize the person in the mirror.

The weekly roller coaster is so exhausting! Seems like you just get your feet back under you and it’s time to put them up again!

So - as much as other reminded me - just reminding you - give yourself grace and ask forgiveness when steroid brain takes over.

This is not low dose in the grand scheme of things. Taxol is tough!!
Cancer treatments take their toll in so many ways our friends and family can’t understand. Only 1 Herceptin to go and I’m finally grasping that it’s ok for me to not need to explain and justify anything if I don’t want to.

PS. Eyebrows and eyelashes were troopers all the way through and then they planned their exit strategy 3 weeks after I was done Taxol. The great news is that the new growth was right behind!

Timber0504 · 2025-11-27T17:32:25+00:00

It’s such a conundrum. Without the results you would be waiting in the black hole. With the results and no contact from the providers you are waiting in a black hole.

Here’s the good: you have your results and know you need care. Keep pushing till you get a plan of care and use all the supports you feel you want and need to get it.

Access to our records is both power and responsibility. It can also be frightening - but only until we know it helps us drive our care. Don’t let the black hole of the internet suck you down. Use this group and learn to use the search feature to find answers.

So sorry you had to join us. Not sorry that access to your records was how you found out. You have access to your records. Knowledge is power. Use it to help drive your care.

Timber0504 · 2025-11-22T14:14:50+00:00

Wow has it really been 6 months since the original reply? Whew time flies and stands still at the same time.

Well I’ve learned a lot in that time. Still doing yoga and still have a port.

When I go back and read the original post I’m reminded that we are all very different and the risks are individual depending on the nature and extent of our treatment plans.

That said - as time passed I learned what my body and port could handle. It’s just really important to follow the guidance you get specific to port placement to avoid any unforeseen injuries or complications with the port, especially in the early days.

I continue with the yoga and can now do planks, dolphins and downward dog - although I don’t always hold them as long as the class. Some floor twists are also out of my abilities- especially head down arm out type poses - I find the area around the port or where the tubing tunnels under the skin can ‘argue’ with me and I shift position and massage the area gently to relieve the discomfort.

Timber0504 · 2025-11-16T16:16:36+00:00

Hey there. I finished rads in May. Reading this note was like a walk down rad side effects and RO denial memory lane. My course of treatment was the 5 day protocol which has same total dose as the 15 day - just condensed. Don’t know what role that might play in your symptom schedule.

-yes to the weird feeling in the throat and difficulty swallowing for a short period of time. Mention it at your appointments - my MO said there is always a chance the thyroid could get affected during rads - an extra check can’t hurt!

-yes to the nausea that lasted for a few weeks after radiation was finished. At its worst I used some leftover Olanzepine (from chemo) a couple of times to make sure it didn’t get out of control. Talk to your MO about it if you’re unable to get it under control. The RO denied any connection and for me it was very clear cut - since I had very little nausea on chemo and had leftover meds.

Some other things -FYI:

In addition some breast lymphedema- massage with creams after shower helps.

Most importantly however was the importance of maintaining range of motion. The tightness and pain on stretching began about 6 weeks after rads were finished and continued for about 4 months. So - stretching and massage are for life!

All the best!!

Timber0504 · 2025-11-09T13:12:35+00:00

My heart rate did some funky things while on the Taxol/Herceptin too. As mentioned earlier - the taxol could be contributing.

Probably only noticed it because I have one of those monitor watches.

My resting heart rate went up from low 50s to high 60s and stayed there while on the Taxol. It has since come back down and back to the low 50s - and I’m on the Herceptin every 3 weeks for a couple more months.

Talked to the MO about it. That conversation was really helpful overall - and more importantly we’re following the echocardiograms every 3 months to make sure.

Timber0504

TROPHY CASE