Me and my diagnosis..........

Hi 

Sorry you left no name, so I will just carry on.

Your not on your own as regards your condition, the radiotherapy I had twenty treatments and I suffered from radiation prostitis, ( bleeding from the anal area, )

 Chemotherapy can be a devil, I suffered from pins and needles in my hands and feet, the second time really did a number on me, hands and feet really bad this time, which included the shakes on my left hans fingers, plus red blotches on my arms and really unsteady on my feet, due to my knees mostly.

Scans, injections, physio’s and a badly scared liver, with less than a two year life scan, but because of my heart, they cannot do a replacement. These are just some of the side effects, but after eight and a half years still fighting and keeping positive.

The main reason I went through all of the above, is to let you know some of the things we go through. If you look at my profile you will get more of a gist of what I’ve been saying.

Your people seem to have a handle on most of what your suffering with, to help with bones I take adcal3, to help with the hot sweats I took Provera 10mg of course you have to check with your team. Have they offered enzalutamide or Aberaterone? 
We are always here to talk or give advice, so your never alone.

Stay Safe

Joe

Hi Anil 

sorry to see you on this forum . However , there are many people in here can give advice although not medically trained . My OH was diagnosed last March and cannot be cured due to where they found a inquinal lymph node inclusion .  He is currently on Aberaterone,   prednisone and 12 weekly Prostap injections which is working well at present . He has just completed  palliative radiotherapy which was every Tuesday for  6 weeks and it was a high doze . His PSA is down to 0.1 . 

we atrend  the Maggie Centre attached to the hospital  and have found them amazing as does this group .

i hope you can access councillor support where you live as it certainly helped us .

Best wishes & take care 

Liz & OH xx

Hi Joe,

I'm Anil.  Thanks for the reply.  Am not looking forward to what is to come but as you say, have to stay positive.

I'm the kind of person that doesn't waste time looking backwards, the past is the past and we cannot do anythng about it so keep looking forward......

I have been offered meds (venlafaxine) to help with the sweats but chose not to take any as am trying to avoid any chemicals that do not need to be in me.

Have been taking Flaxseed oil, Evening Primrose oil, sage and Soy supplements and they have helped.  Not heard of Provera and may look into that (subject to what the doctors say) if the sweats do not subside now that I am off the Darolutamide.

Sounds like you have been through the mill (will have a look at your profile) and good to hear that you are still fighting just as I plan to do.

Stay strong all the very best.

Hi Liz (and OH),

Thanks for the reply, good to hear treatment is working well and long may it continue!

There is a Maggie's attached to my hospital as well and I have got in touch about group therapy specfically in relation to Prostate Cancer, am hoping for a positive response soon.

Keep well and all the very best to your OH.

Hello Anil and welcome. My husband has been on this rollercoaster for the last 4.5 years and we also are going through yet another recurrence or progression - we will find out next Tuesday when hubby has a PSMA PET scan which is the most sensitive type of scan available for prostate cancer and it can pick up micromets.

There are different types of treatments for protecting the bones and hubby was put onto Xgeva as soon as he was diagnosed with advanced metastatic prostate cancer in July 2020 and he also takes daily calcium and vitamin D.

As we have had 4 recurrences so far we have had many conversations with the oncologist and if you read my bio by clicking on the picture by my name it will give you an idea of what was available to us. If the latest recurrence is a single bone met then additional targeted radiotherapy has been suggested. If there are several spots then it might be either Radium 223 (if just in the bones) or Lutetium 177 (if it is mixed lymph and bone mets). We have also been told that additional Docetaxel might be tried before Cabazitaxel. Speaking to the radio oncologist he says he has cryotherapy as an option. Ultrasound or HIFU is available in the UK but I have only heard of it in relation to targeting the cancer when it is contained in the prostate but very often the prostate is treated in order to get rid of the 'mothership'. Doing a quick trawl it does appear that HIFU has been successfully used on bone mets so I would be interested to know if this is what is being proposed for you.

I am not sure if radiotherapy to the prostate or pelvic area is still available for you but have you heard of a Hydrogel Spacer which is injected between the rectum and the prostate to offer some protection to the rectum during radiotherapy.

There is an interesting video I go to which explains what could be available but each persons cancer is different and we appear to follow many different routes.

https://youtu.be/-RVVq0uDAEE?si=FUgcYN0VyEhkLPf4

The sweats are normally from the injections rather than the Darolutamide. My husband had some benefit from taking Sage tablets or drinking 2 cups of sage tea a day but before taking anything it is always best to check with the doctor. There are also tablets which might be prescribed to help you.

You are asking about help so can I suggest you phone Macmillan as they can offer free counselling though BUPA plus they might be able to advise you on how to access groups in your area. Their support line is.

0808 808 00 00

Please ask any questions and we will try to help but please remember that none of us are medically trained.

Hi Anil 

You sound sort of similar to my OH, but he's gone down a slightly different route, Regards possible RT on the area. Mr BW had a "spaceOar" to protect the rectum. ( a cushion of gel is injected between the prostate area and the wall of the rectum, it dissolves and passes out of the body roughly 3 months later)  He then had extensive RT all over the pelvic area / nodes and lower ribs.  He's on Zoladex and Abiraterone for life and he has more pills for the endless hot sweats. Chemo is saved for later, but first ( when and if the HT fails) he will have targeted RT to any area the mets show up. Possible switch to Enzalutamide to see if a sidewards HT move will work ( That's the plan atm ) We paid for the "SpaceOar" and it seems to have worked well at protecting the rectum from any damage. 

It's so easy to slip down into a dark place with all this treatment and side effects. Mr BW can be lost to me sometimes and I realise now that he's gone through several stages of grief in the last two years. But one thing is for sure ... Oh we do like to come out fighting.  There may be options. Please have a look at Mr BW's profile and you will find other information there that you could consider and certainly have a conversation with your consultant about. SpaceOar is supposedly available on the NHS, but very new. I'm not very good at RT and the differences, but BW had the" MRIdian" RT . He was moved about on the bed into several positions, while the MRI scanner moved around him. It will only turn on the RT beam when the target area' is within the window and not before so it's very precise. He had 20 sessions. This I believe is what he will have if his PSA goes up, more as a targeted treatment for any area of his body that shows metastatic spread.  it's well worth asking about these things and if they are an option, and if not why not. 

You are not alone, there's lots of men and their wives/partners that stand beside you, and plenty of support and advice to be had here.

Best wishes Lorraine 

Hello Anil (Anil) 

A belated warm welcome to the Macmillan Online Prostate Community - I am very sorry to find you here, but welcome anyway. I am Brian one of the Community Champions on the group. A little late to the party today as I have been out all day!!

You have had some great replies from some of our Community members and I can't add much save that Sage Tablets cured my hot sweats, and they were bad ones!! I have noticed your comment regarding counselling.

Here at Macmillan in conjunction with BUPA we offer Free BUPA Counselling For Anyone with a Cancer Diagnosis.

The sound of clinical trials is interesting and I do hope you can keep us in the loop with these, in the meantime if I or Macmillan can do anything for you please don't hesitate in getting back to me.

Best wishes - Brian.