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Any Support appreciated

User
Posted 01 Dec 2022 at 16:30

Hello, this is Jeannie, my husband Barrie was diagnosed with Advance Prostate Cancer one year ago.  On Apulutmide for around 8 months plus hormone injection 6 monthly.  The Apulutmide is not working and now talk of Chemo.  Is it worth going own this route, side effects sound devastating.

I/we are hoping to find people on here who can understand and help us through this, there is just no help or guidance out there, just conflicting views.  To be honest, I feel I am going through a nervous breakdown with fear. Is there anyone living near Washington, Tyne and Wear?

Jeannie and Barrie

User
Posted 01 Dec 2022 at 16:52

Hi Jeannie & Barrie, 

I saw your post on my thread I will reply there also.

I'm really sorry to hear that the current treatment isn’t working for your husband. I really don’t know enough about the advanced cancer treatments to be able to offer advice, but there are many on here who I am sure will give you their info and experience. 

From what I see others posting, it would appear that chemo for prostate cancer isn’t quite as aggressive as the chemo for some other cancers. There are many who get minimal side effects or not much at all. Having said that, everyone is different and can react very different to the same treatments. 

It might be worth giving a call to the prostate cancer nurses as they are helpful and knowledgeable. Also macmillan or if you have a Maggie’s in your area or another local cancer centre….just to try and help with the emotional stress that all of this can bring.

Wishing you both all the very best 

User
Posted 01 Dec 2022 at 18:47

I have responded on your other thread.

Have you been referred to the Macmillan nurses or your local hospice? Is there a Maggie's centre at your hospital?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Dec 2022 at 09:13

Thank you Lyn, this is Jeannie, we have found Macmillan most unhelpful.  Maggies is within a hospital and that is the last place we want to go.  We are hoping for real live people who are ideally living nearby, meet up, pretend things are not as bad as they are.  I feel I am suffocating with no-one to talk to or any understanding.

Jeannie

 

User
Posted 02 Dec 2022 at 15:37

Hi Jeannie my husband ( Mike) was diagnosed with advanced prostate cancer in May this year. He has just completed his 6 week chemotherapy cycle. The side effects he had was very minimal. Hair loss and also taste bud affected.However he was still eating well and managed to constinue to play tennis and badminton at least 3 times a week. Since having his chemotherapy his PSA and Alkaline Phosphotase are normalised so this was so good to hear. I like you was so anxious in the begining, however this forum helped me along my husband's cancer journey. I have had some really sound advice from the forum.

Mike is now waiting to commence radiotherapy hopefully starting wihtin the next few weeks. Hope all goes well with Barrie and stay positive as it really does help.

With best wishes to you both.

Maud

User
Posted 02 Dec 2022 at 16:20

Thank you Maud, it is helpful to find people like yourself.  a six-week chemo cycle does not seem very much.  Was it Docetaxel?   Barrie has been told it will be over a number of months 6/7.

Thanks again

 

User
Posted 02 Dec 2022 at 17:15

Hi Jeannie yes it was.  The chemotherapy is given once every 3 weeks and there are 6 cycles. So it will be over a period of s few months. Has Barrie been given a named Oncology specialist nurse?  Mike was given the names and mobile numbers of two nurses. I also found talking to the Prostate cancer specialists nurses ( 0800 074 8383)  extremely helpful and very supportive.  I do hope you will be able to talk to some soon. 

Best wishes 

Maud 

User
Posted 02 Dec 2022 at 17:48

Thank you Maud,  I was confused when you said he finished a 6 week cycle, I thought that was it.

We do have a named Oncology nurse now but I have only rang twice and both times she not available!!  

I do find it helpful speaking with people like yourself on here.  Can I ask how old is Mike?

 

User
Posted 02 Dec 2022 at 17:54

Mike is a very young 80 year old guy. He has always been very active in particular in sports such as tennis, badminton and table tennis. Hope this helps. Maud. 

User
Posted 02 Dec 2022 at 18:52

Brilliant, we wish him all the best.   Curious, was he recommended to take any vitamins prior to chemo?  We have been reading about foods rich in zinc worth having.

 

User
Posted 02 Dec 2022 at 19:17

No Mike wasnt told to take vitamins at all prior to having his chemo. Although I made sure he was having a really well balanced diet. I just looked up on the internet what foods were best to eat and avoid. Maud

 
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