Stage 4 Diagnosis

User

Posted 27 Dec 2018 at 18:25

Hello Betty

So sorry to hear of your husbands diagnosis. I can fully understand how you feel. My husband was diagnosed with T4 N1M1 back in April, it having spread to his pelvis and lymph glands. Like you I’ve had times of little sleep, sitting in an armchair at 3 in the morning with my thoughts and it’s easy at this early stage to say keep positive with all the questions and thoughts going around in your head but once your OHs treatment starts things will look more positive.

Now 9 months on my OH has finished his chemo having had 6 rounds, and is still on his hormone treatment. He was offered to participate in a Stampede trial, running alongside the chemo treatment and the two of them have worked wonders. His PSA is now 0.32 and had the results of his full body MRI today with the best news we could expect to hear - improvement in the prostate and no further spread of the cancer, in fact a slight improvement.

Like jasper we are planning a trip later this year but ours is to Australia to visit our daughter. So please try to be positive. You will find lots of support and advice here.

Best wishes to you both

Merilyn

User

Posted 28 Dec 2018 at 04:48

Thanks Merilyn, good to hear from you. So glad you’ve had such good news about PSA and from body scan. My husband had his second HT injection yesterday and he’s feeling very fragile physically and emotionally. It’s very early days for us but Im hopeful we’ll get some good news before long and we’ll start to feel better. Does bring you closer though and you realise just how kind people are. Quite overwheming at times. Take care.

Betty

User

Posted 28 Dec 2018 at 07:12

Hi Betty

Sorry to hear he is still feeling down. I'm no expert but the ht injections plus the other meds and dealing with the diagnosis made me feel very emotional and fragile at first too. I couldn't even read a verse in a birthday card without filling up ! Which suprised my wife as she says I have a swinging brick instead of heart.

Even at my earlyish stage of treatment, my body and mind have adapted to the meds and Some days I could fight the world, others , well to be honest I do go a bit withdrawn and feel weary. What works for me is browse through the good news stories on this site, it picks me up no end. Try not to google everything, deal with the facts as best you can and try to have a positive outlook.

We are here for you.

Chris.

User

Posted 28 Dec 2018 at 07:34

Thanks for that Chris. It’s taking him a little while to come to terms with it all. He’s an engineer and a ‘fixer’ who can always find a solution to a problem even if it means driving 100 miles for the right bit to fix it with. But I’m sure he’s going to cope with the new challenges. I want to get him looking at this site because there’s so much information and support here, but he doesn’t seem quite ready yet.
Hope you’re doing well.
BW
Betty

Edited by member 28 Dec 2018 at 07:36 | Reason: Not specified

User

Posted 30 Dec 2018 at 07:33

Hi there, can anyone give me an idea what to expect re chemotherapy. I know this is the plan but I’m not sure when as my husband is still feeling a bit battered after hip replacement three weeks ago following pathological fracture of hip. Will that delay the chemotherapy, I wonder?

Also, what is a ‘cycle’ of chemo? How many cycles is normal? How frequent? Can you drive afterwards? I know we’ll be getting all this information in due course but I can’t help thinking ahead and trying to work out how it will affect our lives. My husband is freelance and not currently working due to health problems. I’m also freelance and worried how I can continue to earn a living for us both while supporting him as I want to - esp re chemo.

Thanks for any info or comments.

Betty

User

Posted 30 Dec 2018 at 07:41

Betty there are lots of folks on here with stories of their chemo experience I have read many of them and they seem either breeze through it or have issues, there doesn't seem to be much middle ground. Fingers crossed your husband will breeze through it.

User

Posted 30 Dec 2018 at 07:46

Thanks for replying. Let’s hope so. He’s already feeling very fatigued, sore, emotional, hot flushes etc from HT. And hates having to inject himself every night to prevent blood clots. The thought of chemo as a ramping up of treatment is weighing on him but I will tell him that it might not be nearly as bad as he thinks.

Best wishes

Betty

User

Posted 30 Dec 2018 at 08:30

Hi Betty

Tony has just had his 4th chemo infusion, on the day of the infusion he has been told not to drive as his car insurance would be invalid, other than that he can drive as normal. it is a 3 week cycle of chemo first 2 weeks he feels a bit rubbish and is very tired and falls asleep a lot third week he is more or less back to normal. Tony has had a few side effects , bit of an upset stomach but not too bad so he has been lucky, no feeling sick at all and his hair is going a bit thin but not fallen out so far. Hope your hubby gets on ok .

regards barbara

User

Posted 30 Dec 2018 at 08:56

Thanks Barbara, I’m gradually getting my head around this. So a ‘cycle’ means a session and they take place every three weeks? (Typically.)

Best wishes to you and Tony.

Betty

User

Posted 30 Dec 2018 at 12:53

We do have men here that have continued to work throughout chemo although he must be careful around days 5 - 7 not to expose himself to any infections, etc.

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

User

Posted 30 Dec 2018 at 13:38

Hi Betty

Completed 5 out of 6 chemo infusions on Christmas Eve. I had a bad time on infusion 1 but the last 4 have been okay, days 3-7 after the chemo are the worst, drowsy, tired, lethargic. I'm retired but no way could I have worked during those 5 days but i guess everyone is different.

By day 8/9 I've been back to normal again, particularly with the steroids they give you to help the Chemo.

My 6th and final chemo is 14/1/19, must admit i will be pleased when this phase of my treatment plan is over but overall chemo wasn't as bad as i expected.

User

Posted 30 Dec 2018 at 16:13

Hi Betty..my husband has 6 cycles of docetaxal (chemo) over the summer.. he coped really well with chemo...days 3-7 felt the worst..bone pain and tiredness. Wasn't sick at all and his hair thinned (now growing back even on his already bald patch 😁). He is also self employed and managed to work from home during the 6 cycles although it was reduced hours. It is now 3 months now since his last chemo he's still tired/exhausted but is working and travelling abroad again. Hope this helps. Regards Karen

User

Posted 30 Dec 2018 at 16:31

Thanks Karen and Jasper. Interesting that you both say days 3-7 were the worst. Was that after every cycle? Well, it doesn’t sound like a walk in the park but fingers crossed it won’t be too bad for my man. Hope he keeps his curly hair!

Betty

User

Posted 30 Dec 2018 at 16:33

All the best for the final session, Jasper.

User

Posted 30 Dec 2018 at 21:51

Hello Betty my husband was disgnosed out of the blue with a psa of over 6000 two years ago.

He continued to work through chemo but was v v tired at times. We had an electronic thermometer to keep an eye on possible infections, and he stopped swimming but other than that we kept things pretty normal.

(Im quite militant im afraid about psa testing - although many people and organisations dont support a national screening programme because of issues with the test - i believe very strongly that even though it is flawed it should be given more easily to men over 50. But then I am biased because my husband had asked for one a few years ago because of family history but was persuaded not to have it by a gp who said it ’causes more problems than it solves...’)

Anyway i hope your husband gets a clear treatment plan soon x

User

Posted 30 Dec 2018 at 22:40

Hi Betty....if you had seen my husband during chemo you wouldn't have noticed anything different....as a family with 3 boys (men 18/22/26) still at home we were worried how they would be affected, but seeing there dad coping brilliantly and bbein his usual self really helped us all .think the lovely summer we had helped aswell. Just make sure you do as the hospital tell you, have a thermometer, make sure husband uses the mouthwash twice a day, and rest when needed . Karen

User

Posted 30 Dec 2018 at 23:08

Hi Betty,

Sorry about oh dx but your in best place to ask questions.

As others say chemo can affect everyone in different ways. I had my first 6 cycle treatment a couple of years ago, one every 3=weeks. As Lynn says your blood count goes down on the second week and makes you more subscetable to infection. It’s like washing hands, keeping clean, etc. My chemo went well, worked throughout but listened to my body and rested when I needed to. It’s not easy both physically and mentally. You mentioned your OH has his moments and I too had them but found that chatting about in worked when we needed to. Sometimes you talk about it and other times you don’t.

If your freelance, you can work your way round things. It does take time to get your head round it.

Good luck

Steven

User

Posted 30 Dec 2018 at 23:09

That’s encouraging. I’ll get a thermometer.

Betty

User

Posted 30 Dec 2018 at 23:16

Thanks Steven, it’s helpful to hear from men who have been through it. I’m on a steep learning curve at the moment and we’re in a new world. It’s so good to know that the natives are friendly at least! Thanks for the good advice.

Betty

Edited by member 31 Dec 2018 at 05:36 | Reason: typo!

User

Posted 11 Jan 2019 at 08:12

Hi, just an update from me. OH has now had two injections of degarelix but still has back pain. He spoke to specialist nurse this week and she said they might try some tablets as well as the Degarelix and maybe a ‘blast’ of radiotherapy too. He now has an appt date with onco consultant (his first) next Friday (18/01) - where they will be discussing ongoing plan of treatment incl chemotherapy. Also, the nurse said degarelix takes three months to work but looking online it says there should be 85% decrease in PSA after two months. (was 1429 on dx).

The nurse said she would send a form that he could take to GP surgery for a blood test for PSA which would inform that meeting. That was on Tuesday and it’s now Friday and form hasn’t arrived yet. Is this the usual way to do things? What might the tablets be that the nurse is referring to? Looking for clues.

Very grateful for any comments.

Betty

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