Looking for hope - (ENHERTU next treatment path)

Mez_BCNA

Moderator moved @Kosta post from 'Activity Section' to 'General Discussion' Section:

My name is Kosta and my wife was diagnosed with breast cancer in 2018, and it came back in 2021. As you all know it’s been a traumatic time, and now a few more spots have appeared which has us concerned and in an as it seems hopeless space. 
I'm not sure as to what I am asking, but maybe some hope?

arpie

@kostak I am So sorry that your wife has had a recurrence ..... well done for making enquiries on behalf of your wife.  It can be a rocky road - but your support of her would be invaluable!  xx

Was the recurrence in 2021 or this year?  I hope that any treatment has been successful and that you are both getting on with 'life' as you know it  .....  

A bit more info on your wife's previous diagnosis & the most recent diagnosis would help us understand your wife's journey to date

take care, and all the best - have trust in your wife's medical team 

cranky_granny

@kosta go you good thing. Im glad you’re there for your partner. What treatment is she on at present. Having an understanding of the possible side effects is a great start but she might not get any or only mild  
Keep the channels of communication open do fun things together for distraction like a hobby you can do together.  Also allowing yourselves some space to do your own things its a real balancing act. Treatment can be all consuming if you let it. I hope you both  have a close buddy that will let you offload your fears and concerns to. often just sharing your fears can alleviate some of the stress.  Accept help and ask for help if you need it. 

The people on this network are full of friendly and usually come up with great suggestions 
listening to the various podcasts together could be helpful as well 

kostak

Hi guys and thank you so much for replying and your words of support. 

You ready?
My wife was diagnosed with lobular breast cancer in 2018 and had a mastectomy and lymph nodes taken out as there was slight evidence in one node. 

She received chemotherapy and radiotherapy, and due to the cancer being hormonal had her ovaries removed and was given hormone suppressant tablets to take. 

My wife at the time was 40 years old. All was good till 2021 when three small spots appeared in her liver, which were cancer, type HER2 positive and our wonderful onchology team at the ST George Cancer Care Centre advised us that although they can no longer cure her cancer, they can now treat it. 

She was put on chemotherapy and then on an infusion of immunotherapy every three weeks ( the name of the drugs escapes me), and the one monthly hormone suppressant injections. 

In October last year a bit of cancer moved to her hip bone and radiotherapy was given with no change to her treatment. 

Unfortunately on her follow up check up two more spots appeared on her spine and outside the rib cage of her chest. The liver is still stable. 

This now means her treatment will change to ENHERTU, which is a new treatment, and we are hoping it works. 

Looking on the internet to research all this is terrifying with stats and percentages. 

When I spoke with our nurse she advised to take a step at a time and see how this treatment goes, but reminded me this thing will not go away. 

I hope this helps you with our story thus far, and apologies for the long winded reply. 

cranky_granny

@kostak
stay away from dr google it only gives the worst case scenario. only ever go to trusted sites eg here or the cancer council There are others sites but don’t google anything anymore  
i go to my oncology appointments with a list of questions. They have been great at answering them all my support person also adds notes especially if I mention a new pain or concern i voice to her or things she notices between appointments 

i was diagnosed in 2016 and the bone mets were found in 2019. 

I’ve been on the same treatment since. There have been ups and down with the state of things. I did have  the targeted  radiation on the two main bone lesions. 

There is a carers group on here that could be good to join. If you haven’t joined it already. 

Cath62

What a good partner @kostak. The fact your here seeking support is terrific. There is a closed metastatic group here too if you or your wife needs to join that.  Yes it's all a bit hard but my best advice is to try to stay in the present moment and not get too far ahead of yourselves. 

Stat's aren't helpful and I don't think they are as accurate as they could be because up until recently there hasn't even been a way to count the number of people in Aus with breast cancer metastasis. Don't give up hope. There are new treatments coming. Sounds like you have the treatment plan. You can always ask about clinical trials too.

I know google is tempting and I have been guilty of looking too but I think sometimes it's just better not to look, just stick with your treatment team as you just need to have a break from all the cancer stuff. You're already investing so much time with treatment and supportive therapy that it just takes over.

If you wife is up to it, go for gentle walks, spend time in nature, picnics or whatever you both like to do together. You do need time out as well. What do you do for yourself? I have metastatic disease and my hubby is awesome with my treatment etc but he goes fishing every fortnight on a beach to just have a break and clear his head. 

Does your wife have any counselling? It does help alot too. Great way to vent and express how you feel. It is a real emotional roller-coaster and having someone to talk to outside the family can also be good. 

Ask any questions here. It's is a great group and great support. I hope you and your wife have a good day.

arpie

Thanks for that info, @kostak ....  you've both had a hard trot with it xx. As @Cath62 suggested - join the Mets Group & you can chat with others, in total privacy, going thru similar. xx. 

I can't find anyone being on Enhertu yet (it came onto the PBS in late 2023, so that is good.)   I believe joining the Mets Group will open up more info/replies about Enhertu xx

We have Mets members here who've been on treatment for 10+ years - which is great.   They treat it more now as a 'chronic' disease as there have been so many advances in Mets treatment in recent years.  I have 5 personal friends (not on the forum) who are Mets and they are all going really well xxx

Definitely stay away from Dr Google.  Listen to your team - write down any questions & consider recording your meetings on your phone - as it is easy to totally miss one bit, whilst digesting what had just been said .... 

take care, both of you & all the best for the new treatment xx

kostak

Thank you so much everyone. I feel I can breathe again. 

I will definitely take your advice on Mr google, and will speak to my wife about joining the group. You guys are fantastic. 

May I cautiously say God bless you all, and best of luck to all of you. 

Julez1958

Hi @kostak
It can be  overwhelming  sometimes to be the supporting partner of someone  with metastatic cancer.
It might sound cliche but don’t get too far ahead of yourself and try and enjoy the good times as you can.
I like the saying “ don’t die before you die”.
There are many more treatments than there were even a few years ago and clinical trials of new treatments all the time.
definately stay away from Dr Google !
Also it’s important look after your own physical and mental help - if you have a buddy you can confide in  that is really good.
Some counselling is also something you might think about after talking to your GP.
Take care 🌺

arpie

@kostak - just wondering how your wife is going on the Enhertu treatment?  I hope she is going well xx
 

kostak

Hi arpie. 

Thank you for reaching out. 

She has had two rounds so far, and the first really hit her hard, but the second round is better. We can time the side effects now with the major impact the first week with tiredness, nausea and leg pain, associated with headache. 

The symptoms lessen during the next two weeks and then it starts all over again. 

Our onchologist is happy thus far and said the side effects lessen as the body gets used to the drug. 

She is losing hair slowly and hopefully it just thins out only, and ct scans are scheduled soon. I believe they are making sure her lungs don’t get hurt during this treatment and are confident it is keeping the cancer at bay. 

Thank you again for reaching out, and I hope you are all well. 

arpie

Great to hear she is going OK with the new treatment - and as the Onc says, I hope the side effects WILL lessen soon and same with her hair - I hope it just thins.  xx.  How often are her treatments?

All is good here, thank you 

All the best for the scans xx. take care

kostak

thank you arpie. 

Good to hear everything is good on your side, her treatment is once every three weeks.