Hi this is our story

User

Posted 15 Oct 2019 at 13:31

I’ve just joined this forum, but my husband was diagnosed in sept 2017 with advanced prostate cancer with spreading to the lymph nodes, hip bones and right shoulder. Gleason score of 9.
When we found out it was the worst news and so scary. He started hormone therapy that day and since has had it every 6 months which will be for life. He had chemo in the December of 2017 and finished the last course in April 2018.
In July 2018 he decided to take early retirement. He was 54 on diagnosis. We have 3 boys now 15,13,11. We have been to Florida which was gifted to us by my boss and then since Greece and Mexico as a family making as many memories as we can. We’ve done some lovely things together and one wish was to go to anfield to watch my husbands and boys team play. We have been a few times and we cherish every minute of these times.
My husband struggles a lot with the side affects from the hormone therapy - extreme fatigue, hot sweats, mood changes, weight gain. He says often he feels like he’s totally changed in how he looks and feels mentally and physically. The boys keep him going and I’m always planning our next memory to make.
We are waiting to go today to our consultant for his 4 monthly check ups to see how the cancer is doing. This last month I have to say he’s not been great, tired, fuzzy heads, pale, cold aches and pains so we are a little anxious about today as you never know if it’s the cancer getting worse. Finger crossed!
I’d love to hear from people in the same situation. How you cope with an incurable illness with the symptoms and side affects. Would be great to talk to people who understand.

Thank you

User

Posted 15 Oct 2019 at 22:32

For hot flushes, first thing is to try and work out what triggers them. Keeping a diary is the recommended way. Then you can try avoiding any triggers you identify.

Wear clothes where you can easily throw off some layers or unzip.

Next to try is acupuncture. This is often offered cheaply or for free by hospital cancer support centre (often called Macmillan) and by some of the local prostate cancer support groups. You may be able to get 4 free sessions on the NHS too. I've had very good reports back from people I know who've done these, such as it was so relaxing they didn't want the session to stop, and it significantly reduced the hot sweats, but not complete elimination.

Finally, there are a few drugs which you can try for the hot flushes if they're a serious problem for you. (Don't go down this path if they're just a minor inconvenience.)

The first one you're supposed to try is medroxyprogesterone, but it's pretty much impossible to obtain at the moment. (It's one of the 24 drugs the government recently banned the export of, but that just means the drug wholesalers won't keep any stock in the UK in case it gets stuck here when they need it elsewhere.)

The other two are cyproterone and megestrol. You could ask your oncologist or GP to try you on one of these (I'm not sure their supply situation).

All 3 drugs have side effects, so check those out too. Your GP might want to do a blood test after a few months to make sure your liver copes with them.

The other thing that's important when on hormone therapy is exercise. This helps counteract many of the side effects including fatigue, muscle and bone loss and fat gain, etc. Many of the local PC support groups run exercise sessions, either cheaply or free, with exercises specifically selected for PC and hormone therapy. Look for a support group near you:
Find a support group near you.

Edited by member 15 Oct 2019 at 23:16 | Reason: Not specified

User

Posted 17 Oct 2019 at 12:10

Im so sorry you are also in this same situation. It’s been 18 months since my husband finished his chemo. He worked all the way through that but the fatigue got worse after for him. So decided to take early retirement and enjoy his pension with me and our three boys!
Sometimes I think he could do with a voluntary role to get out a bit more and feel like he has a role other than dad and husband etc. We are going to look into that.
I try not to think to much in advance about what may happen in the future until the cancer becomes untreatable. We haven’t spoken much at all about that part of it as I don’t feel we need to whilst his psa is stable. He does struggle emotionally though and the counselling helped a lot.

Please do keep in touch this seems a very supportive understanding community.

Vicki xx

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User

Posted 15 Oct 2019 at 16:58

Hello Vicky

I am in a very similar situation to you. My husband was also diagnosed Sept 2017 age 54 with Advanced Prostate cancer, PSA 584, spread to Lymph Nodes, Pelvic and sitting bone.

It's been a tough 2 years, hubby has had very bad side effects of treatment and like your husband is very tired and the hot flushes are dreadful.

We have had a lot of holidays this year too, trying to make nice memories.

Our next PSA test is January, always a nerve racking time.

Good luck with your next test.

User

Posted 15 Oct 2019 at 22:32

For hot flushes, first thing is to try and work out what triggers them. Keeping a diary is the recommended way. Then you can try avoiding any triggers you identify.

Wear clothes where you can easily throw off some layers or unzip.

Finally, there are a few drugs which you can try for the hot flushes if they're a serious problem for you. (Don't go down this path if they're just a minor inconvenience.)

The other two are cyproterone and megestrol. You could ask your oncologist or GP to try you on one of these (I'm not sure their supply situation).

All 3 drugs have side effects, so check those out too. Your GP might want to do a blood test after a few months to make sure your liver copes with them.

Edited by member 15 Oct 2019 at 23:16 | Reason: Not specified

User

Posted 15 Oct 2019 at 22:40

Cotton, silk or wool clothing is better than man-made fabric, and try to stick with cotton or linen bedding rather than cotton polyester. Until recently, Leeds Teaching Hospitals NHS Trust offered acupuncture on the NHS for men on HT struggling with hot flushes - they have withdrawn the service now but apparently the results were really good. Some acupuncturists in our area still offer the sessions on a voluntary basis via local charities.

Sage tablets (from Holland & Barratt and most large supermarkets) are worth trying before resorting to drugs and currently, there are no shortages of sage :-/

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

User

Posted 17 Oct 2019 at 09:55

Thank you, he has tried the sage tablets but they’ve not helped. He also tried to cut out caffeine as the nurse said that makes it worse, that made no difference! I think it’s something he may need to just accept to live with.
We are in Bournemouth and we have been told about all the alternative therapies offered from the local cancer centre. We must use this he’s only used it for counselling so far which was amazing. So we will look into the acupuncture.
Thank you for your advice.

User

Posted 17 Oct 2019 at 10:01

He had his 4 month check and psa is down to 0.4 and all bloods are good so that’s a relief again for 4 more months.
He’s been very low in mood as we lost a family member 4 weeks ago from lung cancer we were very close to her and she took part in the mighty hike challenge to help raise money for Macmillan for us and also prostate cancer walk. She died 3 months after finding out she had cancer, so my husband has found it very hard to go through this knowing he will face the same one day. I try and tell him lung cancer and prostate are so different, but it’s hard to get him to see that at times. The nurse told us he can start a 8 week exercise programme on the nhs at our local gym which will be amazing for him as he only really walks the dog daily at the moment.
The nhs is really amazing we cant fault them and our specialist nurse is the most amazing person!
Thanks for all of your replies and sorry that you are also in the same situation. We are enjoying making memories but sometimes it’s very hard!!

User

Posted 17 Oct 2019 at 10:33

Hi Vicki

I have recently joined the forum as my husband was diagnosed in July with advanced prostate cancer, PSA 287, Gleason 8, spread to lymph nodes in pelvis and abdomen.

I have no advice as we are only a few months into this but I wanted to make contact. Full info is in my bio - my husband is a bit older than me, similar difference to you and yours. My husband started HT exactly 3 months ago and is having his fourth chemo session next week. He also has hot flushes, some aches and pains, cramps and lost some hair. He isnt especially fatigued and is still working in a manual job. I think we are both exhausted emotionally, this is all still new to us. You will know what I mean.

Im glad to hear your husbands latest PSA result is low.

I have wrote a similar post to yours on another thread just to reach out to others in the same situation, as you have done, there is so much support on here.

Best wishes

Mrs MAS x

Edited by member 17 Oct 2019 at 11:34 | Reason: Not specified

Mrs MAS

User

Posted 17 Oct 2019 at 12:10

Please do keep in touch this seems a very supportive understanding community.

Vicki xx

User

Posted 17 Oct 2019 at 13:25

Vicki

I'm glad your husband has done well since chemo.

I am only just coming out of the shock phase, my husband was diagnosed following a scan for something unrelated and minor with no symptoms etc. We also don't talk about it much, only about the practicalities of appointment times and medications etc. I have some low days and on others I feel normal, like nothing has happened, then suddenly I remember again.

My husband is positive and upbeat everyday and loves his job so while that is the case and he feels well, it's right for him to carry on.

Sounds like your husband made the right decision for him also but I see where you are coming from regarding a voluntary role especially if he is prone to dwelling on things.

Let's definitely keep in touch, its nice to make contact.

Wishing you both well.

Love MAS x

Edited by member 17 Oct 2019 at 13:32 | Reason: Not specified

Mrs MAS

User

Posted 17 Oct 2019 at 14:11

Hi,

I agree it’s definitely best to keep working and doing what he enjoys for as long as he can. My husband got to the point a year and a bit in and physically found it too much. He does miss it though. He keeps himself busy doing our house and garden up and taking the dog out and running around after the boys! But he definitely would benefit from seeing more people I think.

He does stay positive mostly but can get very down if he allows himself to think to much. I stay the strong upbeat one in front of him and the boys but I struggle too at times. So hard.

lovely to chat and will keep in touch

User

Posted 24 Jan 2020 at 14:32

Hello

I was diagnosed about the same time in late 2017 and chemo in early 2018. Hot flushes used to be frequent and annoying, but I dont seem to have them anymore. Perhaps it is just something that we have to live with and get used to. Hopefully, the same will happen for your husband too. Keeping active really helps. I started coaching boys football (my 11 year and friends) last year, which is great.

Nice to hear about you creating lasting memories.

Stay strong

User

Posted 08 Mar 2020 at 16:52

Hello, sorry to hear of your situation. My husband has recently been diagnosed. Sadly, at only 44 but at a lower risk stage.

I have read on here somewhere this morning that one gentleman has been taking evening primrose oil for hot flushes with success. Hope this can be of some help if he is still experiencing this.

Mel

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