My mum

Hi L

What a stressful time this must be for you all, I hope that Wednesday is able to answer all of your questions and make things a little clearer for you.

I can not help you with regards to the immunotherapy  but would be interest in any response that you receive regarding it. 

For keeping food down, my Husband has found fizzy drinks has been a real positive, I am not aware of whether your Mum has a stent, or if she is continuing on solid foods, so the fizzy may not work, but we have set up a blog which may offer some help - though I am sure much of it your Mum has already been through. 

https://community.macmillan.org.uk/blogs/b/facing-the-future-together

I hope someone is able to give you some positive information which will help to make a difference and good luck for Mum's new on Wednesday

Lowe'

Hi Lowe, 

Thanks so much for your reply.

Yeah hopefully, we're all a bit worried about Wednesday to be honest. And i'm just waiting to hear back from the private hospital about anything they can offer, so it's a bit of waiting around at the moment. But still remaining as positive as we can. We've also said that Mum would be open to any clinical trials if one should come up. 

Oh yes i saw something on the internet about fizzy drinks being good, she does try and do that when eating. It's difficult for me because i live an hour away and have had to stay in Manchester to work since Covid. I have been back tho since the rules have been lifted, which has been great. And very regular video calls have really helped. 

No she doesn't have a stent in, but that could be a possibility in the future. She does try to eat solid food, but Dad tries to cook her softer options of things. But she often is sick. 

Thanks for your kind words.

I really hope that your husband is doing ok.

Sending lots of positive vibes your way.

L  

Hi Lucinda

I am currently having immunotherapy which consists of an infusion of Herceptin (immunotherapy drug) at my chemo centre once every 3 weeks. You are kinda right in saying that the NHS does not routinely treat OC by means of immunotherapy. This is because it is only useful if the cancer cells are HER-2 positive, meaning there is an overexpression of a certain protein on the surface of the cancer cell. Unfortunately, only 15 to 20% of OC cancer cells are HER-2 positive. If the cells are HER-2 negative then Herceptin does not work. 

The immunotherapy drugs work by sticking to the HER-2 cells and highlighting them for your own immune system to recognise and kill. Herceptin aids your body to fight cancer and gets very good results. It has been beneficial for me as my 4cm tumour has almost disappeared but this could also be down to my 6 cycles of chemo which included Cisplatin and Capecitabine. I will be on Herceptin only from now on for the foreseeable future.

Although everybody is different in tolerating Herceptin, the general consensus of opinion is that it has very few side effects and you be unlucky to have them. I have 2 weeks left of taking Capecitabine and then I will be on Herceptin only. I'll let you know if I get any side effects.

Zilly 

Hi Lucinda,

First of all really sorry to hear about your mum's diagnosis, my husband was also diagnosed with stage 4 OC last year so I understand how devastating it can all be.

We did 6 cycles of chemo and are now on Herceptin only, once every 3 weeks.  On the whole we found the side effects of Herceptin on its own to be significantly less than the chemo - there is no supporting medication required (eg for nausea/stomach acid/constipation etc), and on the whole your immune system is less compromised.   Herceptin can however have an effect on the heart, so heart echos need to be done regularly, but so far we have found it much lighter and easier than the chemo regime.  

Has your mum had a test to see if she is Her2 positive?  It probably would have been done at the beginning with a blood test when she was diagnosed.  I'm not sure what chemo regime she is on but if Herceptin is part of it currently it may be an option to continue on this only.

Sending you lots of 'virtual' support and hugs (and to you @ZillyBov, we seem to be on the same road)

Much love and support to all

Hi Zilly,

Thanks so much for your reply. 

I'm so happy for you that your tumour has almost disappeared, that is truly amazing news. I really hope you are doing well with it all, it's so so tough. But i hope that it has been a massive boost for you because you are progressing in such a positive way. 

I am guessing, although i have not asked yet, that she is not HER-2 positive. They should have tested for this shouldn't they at the beginning? Thanks for the information on this, really helpful.

Mum had the phone conversation with her oncologist today, he stated that they can offer radiotherapy and another ct scan after she finishes her chemo, her last chemo is on Wednesday.  

I have the appointment with the consultant at the private hospital on Tuesday, so hopefully this will bring some positive options too. 

Kind Regards and my very best wishes

Lucinda 

Hi Yani,

Thank you so much for your reply. 

I'm so sorry to hear about your husband's diagnosis too. I really hope that he is doing ok, and that you are too.

That's great that he is doing so well on the Herceptin. It sounds like Herceptin is a very good drug from what you and @ZillyBov have said.

I'm not sure if Mum was tested to see if she is HER-2 positive. I will ask her Macmillan nurses soon. I do know that she is not on this at the moment though, she is having cisplatin and capecitabine. I am guessing that either she is HER-2 negative or they haven't tested her for it. Although they seem to be very thorough, so she is probably negative but just haven't mentioned it.

She's due to finish her last chemo on Wednesday, and her NHS oncologist has said radiotherapy to follow this. And another option would be whatever the private hospital can offer her, or either. Will know more after i meet with the Professor from the private hosp on Tuesday.

Sending my very best wishes to you and your husband. 

Lucinda