Struggling through Chemo
Comments
-
Hi Rona
Had my first op Monday 17 th of June so nearly 2 weeks.
No chemo yet, Oncologist Monday and the rest of the Lymph nodes the following Monday.
I am aware that the Oncologist has a trial for early breast cancer and still recruiting. Who knows what she will say.
So my question..does an oncologist plan the treatment post surgery with the rest of the medical team.
Is there also a radiotherapy oncologist involved.
0 -
@Alfie I agree this is the best thread. I’ve been following it since it started even though Ive never commented. It’s been so useful as I go through my own chemo, surgery and radiation path
in answer to your question yes the oncologist usually plans the post surgery treatment or in my case I had chemo before surgery then now I’m nearly finished radiation
you will see radiation oncologist separately, likely after surgery and chemo if you are having it.There are a whole team of people you will meet that will look after every stage of your treatment plan.0 -
Hi Unicorn 3, so happy to read we have all helped here. I told my Breast Care Nurse that I started a page here and she often asks how it’s going. It certainly has been great for me, making me feel a sense of normality and being able to vent when I’ve exhausted family and friends 😂. Of course they all care but we are the only ones who truly understand.
Hope Unicorn 3 has helped you with your questions Alfie 😊.
For me having all my lymph nodes removed has been challenging with pain, but I have learned to keep up the exercises for the cording and keep using my arm even if it’s uncomfortable.0 -
Hi @Rona, it really has been a journey, I look back and it all feels a bit unreal now I'm feeling more my old self.
I've partially ditched the hats and revealed my GI Jane look, although I do still wear them during the day as I'm afraid of burning my head up here 😆 and I want the coverage to be a bit more solid before I completely do away with them. I had long hair too, so it's a bit of change, but a lot easier to manage!
That is a lot of veg! I love broccoli and cauliflower, and ate lots while I was on chemo. Do you use it all yourself? I lost about 5.5kg, and then stabilised, hopefully the dietitian can get you sorted out.
Best of luck @Alfie, it's overwhelming at the start, but you will get through it 🙂1 -
-
Hi Ladies
Thanks @Rona! Your veggie patch sounds amazing!!
I'm now about halfway through the radiation (or "radio ga ga" as I call it!)... a bit tired but otherwise OK...the creaming up seems to be working so far...I'm starting to eye off that bell too 🔔 ! Tying to decide on my swan song for finishing up radio.... so far I've narrowed it down to "I'm on my way" The Proclaimers or "Tubthumping" Chumbawumba which has been my theme song right through this whole hellish adventure (ie 'I get knocked down but I get up again...you're never going to keep me down!")...
I laughed with the Annie Lennox reference because that's what I tell people my hair looks like....mine is starting to get even a bit longer than that now....bit of a mullet happening at the moment 😅 still wearing my hair caps with different hair colours to confuse people and have fun but I can get away without headgear now as I have enough hair... but it's a bit chilly at the moment to do that....ultra short hair is a revelation in terms of caring for it ( or lack of having to care for it..... seriously considering keeping it that way!!!)
@unicorn3 welcome and I am also glad our banter has helped....it helped me to feel more normal to connect with others in the same boat as me!
@Alfie my medical oncologist organised the chemo and having a port put in and the radiation oncologist organised the radiotherapy, then I go back to the medical oncologist for hormone therapy and back to the surgeon for follow-up mammograms starting in November (which will be 12 months since my surgery! Pheeeew what a dreadful 12 months!!). Basically I have a whole team (MDT) treating me (all female too!)...
@Rona and @Katie46 I lost weight on the AC chemo ( could not keep it on ) but put it all back on plus more on the paclitaxel ( couldn't stop putting it on grrrrrr!) I'm 5 weeks post chemo now and it seems to have stabilised...
Hope all are enjoying your weekend!
0 -
Thank you for the welcome @Rona @Katie46 and @Coastiejas. It’s def nice to read of others in the same boat as you and realise that you are not alone. Even though I rarely find time to comment between all the appointments, surgeon, oncologist ,physio for cording, radiotherapy and still doing immunotherapy every 3 weeks on top of getting three school kids out the door each day too its nice to come here and read.Happy Weekend everyone, cold and wet where I am so perfect for resting and relaxing by the wood fire0
-
So, hopeless at remembering names let alone profile names...lordy..
Thankyou all for your responses.
I will contact the Mc Grath nurse by email today, great idea.
Your theme songs are incredible.
I have just got out of our cold sea here in Adelaide.
I am sure people are used to my F...kkks...anyway it was great. It calms the nervous system and your problems go.. just because you can't think...due to numbness...hah
Anyway, I will follow this thread, as you do brighten my day.
2 -
Hi
So I start chemo on the 29th of July. Do you have days when you can sit outside or go for a walk on the beach. I am hoping to still swim. Haven't even looked at paperwork yet as it's to early.
2nd op on Monday to remove lymph nodes plus I will have a port inserted.1 -
Hi @Alfie
Good luck with the chemo...everyone is different but I had some good and some bad days. I'm assuming you'll start on the AC aka red devil and then move to paclitaxel? If so I found the AC pretty brutal but had days where I could sit outside or go for a walk. On the paclitaxel I was much better, and gradually was able to build up strength. I've also got a port, I'll be having mine out soon! Just check with your team about whether you're able to swim with it or not....and whether you are able to swim during chemo due to infection risk when you're immunocompromised...
Best wishes for your op, I've had all my lymph nodes out under my left arm...that was more painful than the breast (I had mine both done at the same time), keep up your pain killers after the op is my tip and keep in contact with your mcgrath nurse.0 -
Hi all, I rang the bell a second time yesterday, radiation treatment is finished 🥳 3 weeks of the slightly higher dose, 15 sessions, left me with a small amount of minor tendernes (most of the time I don't even notice it) and a little bit of a pink blush. I used the sorbolene at least 3 times a day as directed and so far my skin feels fine, they told me to continue using it for at least 2 more weeks.
@Alfie I found the AC treatment gave me the worst side effects, mainly pretty bad fatigue days 4-8 after treatment, I didn't get any nausea, and they are much better at treating that if you do get it. The second week I felt almost normal and was able to get out of the house a little. I was advised to not go swimming in a public pool, so maybe ask your oncologist about sea swimming. I tried to keep up my walking, even if it was only 10 on the treadmill I have on my bad days.
The first day of my treatment I felt like I had such a long road ahead of me, but here I am pretty much out the other side. For me the chemo was manageable. I didn't work during the AC treatment, but did 2 days a week on paclitaxel.
Now on to the next stage, I have an appointment with my oncologist on 19 July to find out what hormone therapy they've decided to give me. Has anyone else started their hormone treatments?
Best wishes for Monday @Alfie
1 -
Hi
My surgeon wants me swimming as soon as possible and my oncologist is happy also.
I always swim in the sea and have done since contracting chronic fatigue syndrome 8 years ago whilst training for a 10km sea swim. So fatigue I know about and will deal with.
I know there are going to be tough times but as long as I can at least get into the sea I will cope.
For anyone who is a beach person in SA they will know Port Noarlunga and it's beauty. The reef is my happy place, feeding the fish. Mind you once a fish was in such a rush to be fed it but me on the nose. Now that's pain.
Katie46 you made me feel so much better.
How wonderful to be ringing the bell.
Well off for my beach walk with the dog.
Take care everyone.
0 -
Congratulations, @Katie26, on finishing your radiation! I had a planning appointment for radiation two weeks ago, and I should start on July 15 for three weeks. I failed the test for holding my breath, so I will go ahead without it. Although it is on the left side, the oncologist told me that it is fine to proceed without holding my breath. I am happy about that too. They will use Mepitel film, so I do not need to apply any cream during the treatment. I am just enjoying a break without any treatment and have started catching up with friends that I have avoided for 10 months. I am still tired, but I keep being active and rest when I really need it. Hope everyone is traveling well.0
-
Hooray to finishing radiation @Katie46, I’ve got one more to go on Monday but there’s no bells where I am
I’ve been using the mepitel film @GorgyS and it’s been great I’ve only got a few small spots that are red and a little itchy but definitely not bothering me at all. They have replaced it twice over the three weeks and it seems to be well worth it
@Alfie I agree the ac chemo is the hardest, I had it every 3 weeks, first week very tired 2nd week much better and 3rd week felt great. No nausea for me but they did give me a heap of other drugs to prevent that before each infusion. You are so lucky to live near the beach, I grew up in Tassie and I miss the beach so much,living in regional vic now
I’m yet to start hormone therapy, my appointment is 6th August so I’ll find out then
so good to be nearly at the end of treatments, I’ve got immunotherapy until November but that’s been easy0 -
Hi Ladies
@Katie46 congratulations on ringing the bell again and finishing radio ga ga 🔔 🥳 🎉 Your tropical holiday is done 😉
I've got 8 fractions left (I'm having 25 at the lower dose). I'm pretty tired and a bit pink and have a bit of a rash under my breast but otherwise OK.
I see my oncologist again next week for the next phase (hormone therapy) but it seems that each stage of treatment is a little less worse than the last... so I'm hoping that it won't be too bad.
@GorgyS enjoy the time off before radiotherapy, I was able to work a few days during my time off.
Hope you're having a lovely weekend ladies!0
