When Chemo doesn't work

So sorry your worried, I had 2 surgeries then chemo and have just started radiotherapy so I can’t comment but I want you to know I’m thinking of you and hoping that when you see the consultant your news will be better than you imagine.

stay strong xxxx

mimi121

Thank you xx

Hello mimi121,

I had my MRI results yesterday. They were a bit disappointing for the doctors as well as me. The tumour has reduced in length by a cm from 5.6cm to 4.7cm. This is what I was feeling when I wrote the question above. They did say that bits had died but they had hoped for more. The shock to me was when they said that the cancer had gone from some of the lymph nodes. I was only told it was in one node possibly two, so to be told many was hard. It also means that it is still in some. I see the surgeon on Monday to arrange surgery; have my chemo on Wednesday; and then the oncologist will be in touch after the surgery to discuss the radiotherapy. Even though it is what I thought, I'm still feeling a bit shell shocked. Thank you xx

Hiya Floss, 

I had a 4cm TNBC tumour removed as part of mastectomy in March with clear margins, some cancer in 1 lymph node but surgeon was happy. Oncology decided to start chemo as belt and braces. I had 8 pactlitaxel weekly before it was stopped due to side effects. Had a 2 week break then had one EC when I was really ill. 

Two days before EC started I had a chest CT and all clear (there had been a lung nodule in the March they were worried about but no change). 

Oncology rang me because I wanted to stop EC, explained I was tired, sick and so breathless. She ordered a new CT of my lungs to check for a blood clot. No blood clot so felt relieved. 

She rang me Friday to tell me the second CT, just three weeks after the first showed some chest nodules and I needed a biopsy. Been today and spoken to Breast Care nurse. I have 3 lymph nodes with a tumour in, a 4cm tumour on my chest wall and my lungs look like someone has emptied confetti in them. Got a CT abdomen and pelvis tomorrow and she will tell me the situation on Friday in full, not curable but maybe some treatment to slow it down. 

I am in shock. If I could rewind to March when I was diagnosed I would have kept my breast, kept my hair and enjoyed whatever life I had left. 

I would ask to speak to your surgeon and say you want to bring surgery forward, but you need to know what the plan is for afterward. 

Sending love xxx

Oh Gistaline, what a journey for you and I can understand you being shocked!!

Ive already had my chemo - 4 FEC and 4 T - Docetaxel. I had the last one yesterday so one more lot of side effects to go through! Today I look like a beef tomato moon face and the taste is changing. I have had a reduced dose of the T and that has helped immensely.

My surgeon is quite up beat. I saw him Monday and my husband was allowed in too!  He said visually on the MRI the lymph nodes are free but he wants to remove them to look under the microscope. I am having a bi-lateral mastectomy too, all in 4-6 weeks time. He is going to take the lot. I don't want reconstruction. Once I'm healed enough radiotherapy follows on my chest wall. We are looking at another five months he says. I'm also having the Bisphosphanates for bone density to combat osteoporosis and iron for anemia. 

I presume they will do another body scan to check for elsewhere as they did when I started back in February/March.

I hope and pray (if that is ok with you) that something happens for you quickly and that somehow you find a little bit of peace in all this. I liken myself to a Weeble - remember those little toys? Weebles wobble but they don't fall down! maybe you are too young for them?  Sometimes the wobble is big and takes a while to bob back up, but it does and you will too.

Keep going and bob back up soon,

Alison xx

Hi there,

I see this is an old post but just wondering how you are getting on

Himalaya

Hi there,

I know this is an old post but wondering how you are getting in now? Am in a similar situation I think.....

Himalaya

Hello Himalaya,

Thank you for asking. I am doing OK . I had my surgery - a mastectomy and complete lymph node removal. I was offered three more chemo afterwards, but could only mange one which is fine. I then did all my radiotherapy which was  so easy to do compared to the chemo. Apart from my pectoral muscle sticking and numbness from the surgery I have been great. Physio is sorting my muscle and the numbness I will live with. It doesn't stop me doing anything. I have had two bisphosphate infusions (having them 6 monthly for three years) which have been OK although getting the canular in has been a problem. I have had my first yearly mammogram which was clear and go to see the surgeon on October 2nd. So I'm good!!!

I see you think you are in a similar situation to me as was, so I hope you find this helpful. I presume you feel your tumour hasn't shrunk. My oncologist told me that although my tumour hadn't shrunk very much it had granulated inside which was good and the lymph nodes had responded completely. It is hard to find the positives at the end of the road of chemo sometimes, but just go with it. Talk to your team. Tell them everything. Explain to them how you and your family are feeling. Covid didn't help us! If I had known there would have been more chemo after surgery, at the start of my treatment my husband and I would have probably coped with it better. My head would have been in a better place. I don't do surprises!!! But I don't regret not being able to do the three. I did one which my oncologist said has helped me. If it ever does come back I will be more assertive at the start and ask exactly the worse scenario of treatment. I need the information so that I am armed to the hilt!!!! Half the problem is that we are learning as we go and I suppose that can't be helped. So as I said be completely honest and tell them everything. Sometimes medical staff forget the person and only see the problem. To them it is often 'normal' day to day stuff and they know the outcomes, side effects and so on. That doesn't mean they understand you or me or our families. Covid complicates the matter. Not having anyone beside you to listen to what they say has been really hard, as have telephone consultations. Ask them to use a phone number that you can put on loud speaker and tell them that you have someone else there with you who may want to ask questions. They don't mind.

Sorry this is so long and that I didn't reply straight away. I only have this on my laptop!

I hope you get on OK. It is hard but you find an inner strength you don't know you have. Please let me know how you do.

Take care. Hugs and love Alison

Hello , I am just at the beginning of this journey and am seriously considering not doing the chemo.   I don’t want to spend what time I have feeling rubbish.  My question is having come out the other side , was the chemo worth it.  How are you now ? Xx

Hello Harleybear,

I'm sorry you are having to go this journey. I won't lie. It isn't easy. BUT you will have support from lots of people, medical, and friends and family. Try organisations too. I found Maggie's were very helpful and the lovely ladies on here.

Now, you ask me if the chemo was worth it. Having just had my first year check up and a chat with my surgeon, it is worth it. Although my tumour didn't shrink much the chemo did clear my lymph nodes which means "it is not as likely to come back in other areas". At the time no one would say anything to me like that, so I have taken great comfort from that statement by the surgeon. He told me to go and enjoy life and I do. I give thanks for that life and my faith has helped me enormously.

At the start of the chemo journey you are scared and haven't a clue what will happen. They give you a long list of all the side effects, but you only get one or two. In my third week of my three week cycle I could have gone out and about and had a coffee. However I was under total lockdown from the start because of the pandemic. We had take-aways instead and home made pamper sessions. So you will feel like doing things and these things will help you push through the barrier.

I started to struggle when my hair fell out. Not so much my head but my eyelashes. I really missed them. I couldn't get a wig because of pandemic restrictions. But now you will be able to get a wig and glam yourself up!!!

The last few were hard. I had four Doxcetaxel. If you struggle the oncologist can reduce the dose to make it bearable. I did.

I struggled emotionally with my extra chemo which came out of the blue. I gave it my best shot but only did one out of three. Family problems. But i did the radiotherapy and lots of physio and occupational therapy (which is more than filling your time, they helped me with a plan of action to get going again) all of which helped and I feel great!

So that's me. Everyone is different. Weigh it all up for you. Think of the things you long to see and do and if chemo is going to help you do those things then try it. Be honest with your team. I'm looking forward to my 40th wedding anniversary next year, to spending time with my husband as he retires and hopefully one day my son will get married and I will be there.

Take care and God bless,

Alison xxx