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User
Posted 11 Sep 2019 at 16:26

My husband has recently been diagnosed - T3b N1 M1 His mets are currently in his pelvis and lymph nodes and his gleason is 5+4 = 9 He is 59 years old and has always been fit and healthy. He has also been diagnosed with a separate cancer in the bladder (been told not associated with the prostate). 

He has started on HT tablets initially and now monthly injections. We have been told that chemotherapy will be next but will not get full treatment plan until bladder tumours removed and biopsies carried out. If bladder tumours are aggressive like the prostate then possibly bladder and prostate removal on the cards. 

We both feel we are currently in a state of discovery and comprehension, we are scared and worried as we await the full set of results. We are both of an optimistic mindset and determined to do all we can to deal with this in the best possible way. 

Thankfully my husband has been prepared to talk about all of this with me, share how he feels, especially as the HT effects kick in and discuss our fears and trepidation as we embark on this new and very unexpected chapter in our life. 

I am writing this as I have found this forum a great source of information and it has helped me realise there are lots of treatment options available. I hope our story may help others today and in the future. 

I will update as and when we get news or face issues and I will try to give an honest account of how we have dealt with each stage or overcome difficulties. 

With love.... tomorrow is another day x 

 

User
Posted 11 Sep 2019 at 16:26

My husband has recently been diagnosed - T3b N1 M1 His mets are currently in his pelvis and lymph nodes and his gleason is 5+4 = 9 He is 59 years old and has always been fit and healthy. He has also been diagnosed with a separate cancer in the bladder (been told not associated with the prostate). 

He has started on HT tablets initially and now monthly injections. We have been told that chemotherapy will be next but will not get full treatment plan until bladder tumours removed and biopsies carried out. If bladder tumours are aggressive like the prostate then possibly bladder and prostate removal on the cards. 

We both feel we are currently in a state of discovery and comprehension, we are scared and worried as we await the full set of results. We are both of an optimistic mindset and determined to do all we can to deal with this in the best possible way. 

Thankfully my husband has been prepared to talk about all of this with me, share how he feels, especially as the HT effects kick in and discuss our fears and trepidation as we embark on this new and very unexpected chapter in our life. 

I am writing this as I have found this forum a great source of information and it has helped me realise there are lots of treatment options available. I hope our story may help others today and in the future. 

I will update as and when we get news or face issues and I will try to give an honest account of how we have dealt with each stage or overcome difficulties. 

With love.... tomorrow is another day x 

 

User
Posted 12 Sep 2019 at 23:49
This is called the couples disease for good reason. I was 45 when my husband was diagnosed and I have grieved for what we both lost. Life can be good, even great, with PCa but it will never be the same as before.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Oct 2019 at 06:42
Keep going Sunny-Jane,

There are many treatments that your Onco has in his cupboard that should keep your husband going for many years.

If you tap my profile you will see some of the treatments that I have had and continue to have over the past 4 years.

I am still working part time, as in my case it keeps my brain occupied and I enjoy the comradery of the work environment.

My energy levels have lowered, but life continues to be good.

Kind regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 03 Dec 2019 at 15:00

Hello everyone, have been a way a while as life has continued to evolve around hubby’s treatment.

Update:

Following first chemo cycle he became neutropenic and had an overnight stay in hospital, sent home with antibiotics. These resulted in hepatitis and a subsequent weeks delay in his next chemo session. Symptoms were orange/dark brown urine and diarrhoea, yellow in colour and feeling very tired. By the third week he also started to lose his hair, so a couple of visits to the barber soon sorted him with a modern, almost peaky blinder style cut!

One week later than planned he went through his second cycle of docetaxel, as usual he has to take 8 steroid tablets day before, day of and day after treatment. These help to counteract any adverse reactions to the chemo but they also cause him to feel totally wired, unable to sleep, increased appetite and subsequent fluid retention. His mood is more boisterous and he loses his usual tolerance and patience. Two or three days after stopping the steroids he then has a night of being up all night, passing all the retained fluid and his normally calm temperament returns.

10 days after the second cycle he came home one evening after work complaining of feeling really cold, he had a temperature of 38.2 c and a phone call to the hospital resulted in him being admitted again for antibiotics. Bloods showed some liver inflammation and raised inflammatory markers, so doctors felt he was brewing an infection. We are hoping that on this occasion the antibiotics will not affect his liver (been prescribed different ones to last time) and his next cycle will go ahead next week.

Life in general is good, he is working between cycles but many would say too hard. He has had many different side effects – numb toes, itchy skin, nausea, hair loss, bone pain, fatigue, breathless, back pain, metallic taste, off food and alcohol etc etc BUT we remember and keep reminding ourselves this is a result of the treatment not the disease. The treatment is necessary to slow the growth of the cancer and this current treatment will be over by mid-February.

There are still days where life seems unfair but we never really and truly understood the saying “take each day as it comes” until now. We thought we did but it is not until you are faced with so much uncertainty that you truly understand the true meaning of the phrase. We work hard to smile everyday and find small things really funny. You’ve got to laugh!!

My learnings are: take each day as it comes, keep calm and patient and tolerant. The effects of the HT, chemo, Steroids, Filgrastim injections, constant painkillers, lack of sleep, mental worries about themselves, spouse and families and work all add up to making someone different to what they were prior to the diagnosis. We made the decision early on to talk about everything and that has worked for us but any wife or partner who is supporting someone through this must remember to take care of themselves. I can’t cope when I have days on end of no sleep, so get proper rest, meet your friends and take time out. That has been important for me and it enables me to be as supportive and loving and understanding as I possibly can be.

Sending all my love to everyone on this journey

SunnyJane xx

User
Posted 13 Sep 2019 at 14:12
Hi SunnyJ,

Your OH DX was similar to mine just about 5 years ago. I've always tried to be positive on this crappy situation and myself and OH always discussed what was happening physically and emotional and over a period of time sometimes we talked about it and sometimes we didn't and got on with life. We found the unsettling times was once tests were done, it was the waiting for results but once a plan was in place it was easier to get on. As CC's say a good positive attitude is half the battle and my BIL a ex GP agrees.

I had hot flushes for several months once I started HT but it did fade after a while.

Good luck with forthcoming treatments.

steven

User
Posted 19 Sep 2019 at 16:13

Having trouble with finishing the post as editor seems a bit cranky πŸ˜€πŸ˜€ 

with love to everyone finding themselves in this position. Tomorrow is another day πŸ’–πŸ’– xx 

User
Posted 03 Dec 2019 at 23:30
Keep up with the sunshine Jane you are a star..
User
Posted 11 Sep 2019 at 19:08
Sorry that you find yourself here, Jane, but you certainly have the right approach to it. Mental attitude is half the battle!

Very best wishes,

Chris

User
Posted 12 Sep 2019 at 12:03
Interesting since I posted a couple of days ago, my husband has started to experience hot flushes and his face has broken out in cold sore type lesions.

He is due to see the onco team next week and yesterday went for a PSA blood test to check his levels prior to the appointment, he original result was 75 so will be interested to see the affect of the HT on this. He also has another hormone injection next week.

We are feeling optimistic and making changes to our diet and ensuring we are getting out walking the dogs, even though he is experiencing fatigue.

Life feels a bit in limbo as we await further surgery for the bladder tumours and biopsy results. We cannot make decisions where work or holidays are concerned but are thinking through the different scenarios.

Quote: Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.

User
Posted 12 Sep 2019 at 12:47
Sunny Jane, mine is similar at age 54yrs - T3b N1, Gleason 9 and with "significant pelvic nodal disease" where it has spread into the pelvis. I've been having hormone treatment and start chemotherapy next week, no option for RT at the current time.

It's all a massive learning curve and me and my wife are trying to plough through all the information as best we can.

It's pretty daunting to be honest, however the more i read the more informed i seem to become, which makes it a bit easier.

I agree that life does feel in limbo as treatment and results are always awaited and constantly on one's mind.

We are soldiering on together through this, along with other issues that always seem to kick you as well when you're already down....

User
Posted 12 Sep 2019 at 23:28

Hi Cookie

Your situation sounds very similar to my husband. It is a most horrid thing to get such a diagnosis but I think we underestimated the impact on the immediate family. As his wife I feel guilty for feeling so terribly upset as I want to be strong for him. That’s why we have found such strength in talking about it together and allowing ourselves to sometimes feel very sad and other times have a good laugh about it all. 

May seem a bit nuts but we have agreed not to hide our feelings, fears or worries. 

I hope your ongoing treatment has a positive impact and look forward to sharing your journey. 

Best wishes

SunnyJ πŸ˜€ 

User
Posted 18 Sep 2019 at 13:53

Hi sunny-Jane 

 Wishing you both all the best and thanking you for your positive posts. My husband is 56 and has just been diagnosed ( Gleason 4+4)he’s having an isotope bone scan on Friday and then a meeting to discuss treatments. I’m finding this forum so helpful and it’s giving me some hope for the future. 

 

P.s. What a lovely happy name you have! πŸ˜€

User
Posted 01 Oct 2019 at 23:28
Hi everyone

We have had a traumatic few days over the last week. My husband went in for his TURBT a week ago. When he finally arrived back on ward 4 hours later he explained that there had been complications with one of the resected tumours continuing to bleed.

After a few more hours he was readmitted to theatre for further cauterisation. He was discharged after catheter removal 24 hours later. After arriving home he slowly found passing urine more and more difficult and ended up returning to hospital via A&E. He was eventually in retention for nearly 14 hours - not good. He spent another 18 hours in hospital and is now back home.

So his 15 min procedure ended up being 4 days, with a fair amount of blood loss, two anaesthetics and having to be catheterised twice. Still feeling very sore but on the mend. He is a true fighter and has returned to work this week despite discomfort.

The surgeon thinks that one tumour is mets from the PCa but thinks the other one is a separate tumour. We will just have to await biopsy results next week.

Life continues to be turned completely upside down and with still uncertainty as to his full diagnosis you find your thoughts preoccupied with all the what ifs throughout the day.

I had under estimated the impact on myself and also on the wider immediate family. We are trying to stay strong and positive but we are both exhausted since from the hospital stays and nights of interrupted sleep.

I will update once we have our next oncology visit.

Will smiles and positive thoughts for anyone going through this....

Much love

SunnyJane xxx

User
Posted 09 Oct 2019 at 19:03

Hello... 

visited onco today to receive biopsy results from the bladder tumours. As expected one is mets from the prostate cancer and the other is low grade and been dealt with via ongoing local treatment and observation. 

This means chemo can now commence and first dose of docetaxel begins in two weeks. One dose every 3 weeks for 6 occasions. He will remain in the HT and will obviously be taking steroid tablets before, during and after the chemo session. 

We are delighted that things could have been much worse with him having to undergo bladder and prostate removal so we are grateful that this will not be the case. 

My husband and I are both pretty tired at the moment, I suppose the constant worry takes it toll but we are happy to have finally received a more definitive diagnosis and we now have his treatment plan. 

Now it is time to stay optimistic, keep as healthy as possible and look after one another. 

With love to all going through this.... 

SunnyJane 😍 xx 

User
Posted 23 Oct 2019 at 13:19

Good luck Jane & hubby.

 I can understand him wanting to cut the grass, there is an urge to be normal!

hope all goes well 

 

Rob

User
Posted 23 Oct 2019 at 23:14
Did anyone mention pineapple to you? Freezing chunks of fresh pineapple for him to suck during infusions will help protect his mouth from sores and it reduces the metallic aftertaste. If he can’t have pineapple (due to heart problems, for example) sucking ice cubes may help.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Oct 2019 at 21:52
Perhaps a bit unusual to feel rubbish immediately and then get a bit better, often reported here that the first few days are fine but days 5-7 are a trial. Also keep in mind that days 7-12 are when he is most susceptible to infection and should be cautious about being in large groups of people - has his employer done a risk assessment and have colleagues been asked not to come to work at peak times if they believe they have an infection? Have you got a decent thermometer and are you checking his temperature daily?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Oct 2019 at 11:02

I have never posted on this sight, but feel compelled to say that my husband was instructed to take over-the-counter Claritin (an allergy med) while taking the Filstsgsam shot in days 3-8 post chemo infusion and found relief from bone and body aches he experienced from it as a side effect. The doctor admitted that they do not know exactly why it helps, but it does. Hope that is helpful.

User
Posted 29 Oct 2019 at 18:44

Hi Jane, thanks so much for that, my husband has been diagnosed and has had biopsies today, so obviously we won't know all the numbers and figures until we next see the consultant. The cancer is in one side and is contained, I don't know how relevant that is. We are a bit shell shocked at the moment, although I strongly suspected when the consultant rang us at home to say something had shown up on the MRI scan. Anyway, I have made my gorgeous man a chicken casserole and everyone knows chicken casserole can brighten up even the darkest days xxx

User
Posted 29 Oct 2019 at 22:53
Hi Jane,

Just been reading through your thread and your OH is more or less running 18 months behind me but thankfully I missed out on the Bladder Cancer bit!!

I wont clog up the post with my details please have a look at my profile for the nitty gritty.

Reason I am posting is that I noticed that after your OH's first Chemo session you mentioned that you had finished the steroids the day after. In my case I had to take 2 tablets a day between sessions and the 4 tablets at 12 hours, 3 hours & 1 hour before the next chemo session. Everyone was constantly checking that I had done this. My Onco even got quite annoyed that I hadn't been given enough tablets after my 1st session as it was 3 weeks and 3 days till my second session and they only gave me a 3 week supply.

Maybe I read your post wrong and he is still taking steroid tablets but if not I would check with you Med Team.

All the best

User
Posted 03 Dec 2019 at 16:38
Hi Jane I remember the sleepless nights when taking dexamethasone steroids whilst on Chemo last winter.

Bouncing around the house at 4am, crazy what these drugs do to our cancer club members.

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User
Posted 11 Sep 2019 at 19:08
Sorry that you find yourself here, Jane, but you certainly have the right approach to it. Mental attitude is half the battle!

Very best wishes,

Chris

User
Posted 11 Sep 2019 at 19:17
Thank you Chris for your response, we are determined to remain positive :) It is great to find this platform where others truly understand.

Best wishes

SunnyJ

User
Posted 12 Sep 2019 at 12:03
Interesting since I posted a couple of days ago, my husband has started to experience hot flushes and his face has broken out in cold sore type lesions.

He is due to see the onco team next week and yesterday went for a PSA blood test to check his levels prior to the appointment, he original result was 75 so will be interested to see the affect of the HT on this. He also has another hormone injection next week.

We are feeling optimistic and making changes to our diet and ensuring we are getting out walking the dogs, even though he is experiencing fatigue.

Life feels a bit in limbo as we await further surgery for the bladder tumours and biopsy results. We cannot make decisions where work or holidays are concerned but are thinking through the different scenarios.

Quote: Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.

User
Posted 12 Sep 2019 at 12:47
Sunny Jane, mine is similar at age 54yrs - T3b N1, Gleason 9 and with "significant pelvic nodal disease" where it has spread into the pelvis. I've been having hormone treatment and start chemotherapy next week, no option for RT at the current time.

It's all a massive learning curve and me and my wife are trying to plough through all the information as best we can.

It's pretty daunting to be honest, however the more i read the more informed i seem to become, which makes it a bit easier.

I agree that life does feel in limbo as treatment and results are always awaited and constantly on one's mind.

We are soldiering on together through this, along with other issues that always seem to kick you as well when you're already down....

User
Posted 12 Sep 2019 at 23:28

Hi Cookie

Your situation sounds very similar to my husband. It is a most horrid thing to get such a diagnosis but I think we underestimated the impact on the immediate family. As his wife I feel guilty for feeling so terribly upset as I want to be strong for him. That’s why we have found such strength in talking about it together and allowing ourselves to sometimes feel very sad and other times have a good laugh about it all. 

May seem a bit nuts but we have agreed not to hide our feelings, fears or worries. 

I hope your ongoing treatment has a positive impact and look forward to sharing your journey. 

Best wishes

SunnyJ πŸ˜€ 

User
Posted 12 Sep 2019 at 23:49
This is called the couples disease for good reason. I was 45 when my husband was diagnosed and I have grieved for what we both lost. Life can be good, even great, with PCa but it will never be the same as before.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Sep 2019 at 14:12
Hi SunnyJ,

Your OH DX was similar to mine just about 5 years ago. I've always tried to be positive on this crappy situation and myself and OH always discussed what was happening physically and emotional and over a period of time sometimes we talked about it and sometimes we didn't and got on with life. We found the unsettling times was once tests were done, it was the waiting for results but once a plan was in place it was easier to get on. As CC's say a good positive attitude is half the battle and my BIL a ex GP agrees.

I had hot flushes for several months once I started HT but it did fade after a while.

Good luck with forthcoming treatments.

steven

User
Posted 13 Sep 2019 at 17:57

Hi Lyn

I have been quite amazed how the feeling of loss creeps up on you and how I feel guilty for worrying about myself when he is the one with the dx. I suppose age comes in to it I am 53 and a few weeks ago was not expecting our life to change so dramatically. 

I guess I am going through the classic stages and things will become clearer and easier to deal with when we get a full dx and plan. 

Thanks for your insights and support, very much appreciated xx 

User
Posted 13 Sep 2019 at 18:04

Hi Steven

thanks for your message, I suppose getting used to the symptoms is all part of  it. 

We are both looking forward to receiving the full results as the different treatment options are quite far ranging from HT to chemo to bladder and prostate removal. 

We know whatever the path we have to take will be challenging and we are not perfect so some days will be harder than others on our relationship but determined to face it head on and do whatever we can to help one another πŸ˜€ 

 

User
Posted 18 Sep 2019 at 13:53

Hi sunny-Jane 

 Wishing you both all the best and thanking you for your positive posts. My husband is 56 and has just been diagnosed ( Gleason 4+4)he’s having an isotope bone scan on Friday and then a meeting to discuss treatments. I’m finding this forum so helpful and it’s giving me some hope for the future. 

 

P.s. What a lovely happy name you have! πŸ˜€

User
Posted 19 Sep 2019 at 16:08

Hi Everyone

since I last posted my husband as had a new PSA test done and the HT has reduced it from 75 to 5.05. Interestingly we both felt this was the first bit of good news for a long time. 

Yesterday we visited oncology for the first time and everything once again comes rushing back at you full speed ahead. It is such a surreal situation, sometimes it feels like none of this is happening and life is   very much just going on the same as it   always has done and then wham - reality    strikes.  

 Next week my husband has his TURBT op and we then have another agonising wait to hear the biopsy results  Basically if the bladder tumours are mets from PCa then he will start chemo Docetaxel, six doses every three weeks initially. He will stay on his HT for life. If this is a different tumour he may have to have the bladder and prostate removed, followed by chemo or they may just decide to do chemo but will have to prioritise whether to treat the prostate cancer or bladder cancer first  

There is always so much uncertainty and waiting to hear results but we know we are no different from anyone else in this situation. We are talking lots and whenever possible joking and laughing. We can’t change our situation but we are in control of how we choose to deal with it. We are determined to keep loving one another, being kind and not letting this horrid situation make every day miserable.

Our next big date after the op is early October where the final piece of the jigsaw should slot in to place, hopefully we will then have a more definitive treatment plan and we can start making some other life and business decisions around it.

We can not fault the care we have received to date and the empathy shown by the NHS staff, they have be very honest and given us their best guess in terms of prognosis. Sadly we are not in the best of positions as the cancer is so aggressive but we are determined to make the best of everyday.

With  

 

 

Edited by member 19 Sep 2019 at 16:09  | Reason: Post not finished

User
Posted 19 Sep 2019 at 16:13

Having trouble with finishing the post as editor seems a bit cranky πŸ˜€πŸ˜€ 

with love to everyone finding themselves in this position. Tomorrow is another day πŸ’–πŸ’– xx 

User
Posted 01 Oct 2019 at 23:28
Hi everyone

We have had a traumatic few days over the last week. My husband went in for his TURBT a week ago. When he finally arrived back on ward 4 hours later he explained that there had been complications with one of the resected tumours continuing to bleed.

After a few more hours he was readmitted to theatre for further cauterisation. He was discharged after catheter removal 24 hours later. After arriving home he slowly found passing urine more and more difficult and ended up returning to hospital via A&E. He was eventually in retention for nearly 14 hours - not good. He spent another 18 hours in hospital and is now back home.

So his 15 min procedure ended up being 4 days, with a fair amount of blood loss, two anaesthetics and having to be catheterised twice. Still feeling very sore but on the mend. He is a true fighter and has returned to work this week despite discomfort.

The surgeon thinks that one tumour is mets from the PCa but thinks the other one is a separate tumour. We will just have to await biopsy results next week.

Life continues to be turned completely upside down and with still uncertainty as to his full diagnosis you find your thoughts preoccupied with all the what ifs throughout the day.

I had under estimated the impact on myself and also on the wider immediate family. We are trying to stay strong and positive but we are both exhausted since from the hospital stays and nights of interrupted sleep.

I will update once we have our next oncology visit.

Will smiles and positive thoughts for anyone going through this....

Much love

SunnyJane xxx

User
Posted 09 Oct 2019 at 19:03

Hello... 

visited onco today to receive biopsy results from the bladder tumours. As expected one is mets from the prostate cancer and the other is low grade and been dealt with via ongoing local treatment and observation. 

This means chemo can now commence and first dose of docetaxel begins in two weeks. One dose every 3 weeks for 6 occasions. He will remain in the HT and will obviously be taking steroid tablets before, during and after the chemo session. 

We are delighted that things could have been much worse with him having to undergo bladder and prostate removal so we are grateful that this will not be the case. 

My husband and I are both pretty tired at the moment, I suppose the constant worry takes it toll but we are happy to have finally received a more definitive diagnosis and we now have his treatment plan. 

Now it is time to stay optimistic, keep as healthy as possible and look after one another. 

With love to all going through this.... 

SunnyJane 😍 xx 

User
Posted 10 Oct 2019 at 06:42
Keep going Sunny-Jane,

There are many treatments that your Onco has in his cupboard that should keep your husband going for many years.

If you tap my profile you will see some of the treatments that I have had and continue to have over the past 4 years.

I am still working part time, as in my case it keeps my brain occupied and I enjoy the comradery of the work environment.

My energy levels have lowered, but life continues to be good.

Kind regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 14 Oct 2019 at 23:46

Thank you Dave, we sort of feel that we will manage the next few months in the best way we can until this cycle of chemo is over in Feb 2020. Resting when needs be but keeping an optimistic and positive  mindset  

You are right that keeping the mind active is so important and we are lucky that we can fit my husbands work around his treatment. 

I am sure it will be better once treatment is underway, at the moment it is the fear of the unknown. Also he has had three weeks of feeling unwell since the TURBT (he is never unwell) so it has been a bit of a challenge  He is still passing blood clots and scabs, so hoping this will settle soon  

I will certainly go and read your story, so grateful to all who contribute to this forum It definitely stops you from feeling alone πŸ˜€

With love to all on this journey 

SunnyJane xx 

 

User
Posted 20 Oct 2019 at 23:28

Quick update.... 

my hubby had not returned to any normal pattern of urination since his TURBT over three weeks ago. He has been waking every hour during the night and had obviously not been emptying his bladder and has a pretty constant feel of needing to wee. 

On Thursday evening he got up at midnight and passed a large blood clot, he then began to pass frank blood all through the night and this was causing more and more clots which in turn stopped him from passing any urine. Once again he was in agony and we had to call the doctor. 

Eventually they called an ambulance for him and he spent many hours in A&E waiting to be seen and most importantly catheterised. We were really concerned that any prolonged retention may cause an issue with his kidneys and then chemo would not go ahead. 

To cut a long painful story short he spent another 48 hours in hospital and the continual bladder irrigation resulted in him feeling the best ever since the op. 

He is now home and this week will see the start of his first chemo session. Will be interested in his blood results tomorrow esp PSA as he has had three consecutive months of HT. 

Will update once he has received first chemo dose. He has been pretty washed out since this latest bladder issue and stay in hospital but has insisted on cutting the grass today which resulted in him exhausting himself. 

With love to everyone going through this.... 

SunnyJane xx 

User
Posted 23 Oct 2019 at 13:19

Good luck Jane & hubby.

 I can understand him wanting to cut the grass, there is an urge to be normal!

hope all goes well 

 

Rob

User
Posted 23 Oct 2019 at 22:51

You are right Rob, maintaining a sense of normality is so important. 

My hubby received his 1st cycle of Docetaxel today and is now back at home with more medicines than expected. We learnt that 48 hours post chemo he has to inject himself daily to protect his immune system. This was a surprise but nothing we can’t handle. 

So far symptoms have been mild, some affected taste, flushed face but no temperature and a mild headache. We expect fatigue as he is already suffering with this from his HT. 

He also signed consent forms to be put forward for the ATLANTA trial, we hope to hear about this in 2 weeks, he will be the first person from our hospital to go on this trial. 

So all in all with a pre chemo PSA of 0.2 (originally 75) a pretty stress free first chemo cycle (hope we are not speaking too soon) and enjoying a good supper whilst hubby watched football - life is pretty good! 

He has continued to work but now has the next couple of days plus the weekend off to rest but hopes to be back to work on Monday. 

With love to everyone on this journey.... 

SunnyJane xx 

User
Posted 23 Oct 2019 at 23:14
Did anyone mention pineapple to you? Freezing chunks of fresh pineapple for him to suck during infusions will help protect his mouth from sores and it reduces the metallic aftertaste. If he can’t have pineapple (due to heart problems, for example) sucking ice cubes may help.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Oct 2019 at 20:35

Thanks Lyn, that’s really useful to know. He has experienced some metallic taste today and he said his mouth felt sore. We will definitely try that next time. 

He has experienced his face flushing and some fatigue but has managed to rest this afternoon. 

He did not sleep the night of having the chemo and could only describe a feeling of something felt different inside his body. 

24 hours after first chemo dose he feels remarkably good but is pragmatic that he may feel worse as the days go by. He has finished his steroids for this cycle and his injections start tomorrow. My hubby has felt frustrated today but I think much of that is getting used to not doing much on a normal work day  

We have set up a room in the house where he can watch tv, read his books, listen to music and work on his laptop. He has found this a calming refuge where he can sit and do whatever he feels like doing. 

Interestingly the feeling of losing control seems harder for him to bare when trying to exist in his normal family/work life situation, he finds being in hospital easier to deal with. I think it is because when he is there he can just sit back, relax and let the doctors do their thing.

I will continue to update as and when our situation changes for better or worse. 

With love to all going through this journey... 

SunnyJane xx 

User
Posted 27 Oct 2019 at 21:36

Four days post chemo and life is changing at quite a pace. My hubby has dealt with this latest phase of his treatment with his usual optimism and stoicism. 

He has experienced real fatigue, a sense of not being present, feeling like he has been put through a different mangle daily, aches and pains, some nausea, some metallic taste, some slightly abnormal bowel movements, real sleep disorder and a general feeling of just not wanting to do much. 

He has managed to eat normally and continues to have a very sweet tooth. We have frozen some pineapple chunks as per Lyn’s suggestion and we are ensuring that we are eating a healthy diet with lots of fruit and vegetables. 

At his chemo appointment he was given some syringes to inject into his tummy daily for 7 days and having researched the medication online we can see that the side effects from Filgrastim are pretty much what he is experiencing in addition to the chemo. 

Tomorrow my hubby intends to return to work but I am really concerned that he will have the energy to do so. He was pleasantly surprised the first couple of days post chemo but I think has been quite shocked how debilitated he has felt over the last couple of days. 

He has not managed to do anything around the house other than watch tv and sleep. This is not like him at all, we have always done everything together and he has on many occasions expressed his sorrow that he cannot be more helpful. 

I have told him and tried to reassure him that we are fighting this together and my part of the fight is to love and care for him unconditionally. We know this has an end this current chemo cycle so this current way of life will not go on forever. 

I would be lying if I said it was easy, it is not. To see the man you love literally change in front of your eyes is heartbreaking but we are stronger together and we find lots to laugh about and be grateful for. 

We take a daily photo when we find something funny to record our laughter and happiness together I am also going to start a daily gratitude diary. There is always something to be grateful for - today it was the glorious sunshine and blue sky. 

 

User
Posted 27 Oct 2019 at 21:37
With love to all on this journey

SunnyJane πŸ™ xx

User
Posted 27 Oct 2019 at 21:52
Perhaps a bit unusual to feel rubbish immediately and then get a bit better, often reported here that the first few days are fine but days 5-7 are a trial. Also keep in mind that days 7-12 are when he is most susceptible to infection and should be cautious about being in large groups of people - has his employer done a risk assessment and have colleagues been asked not to come to work at peak times if they believe they have an infection? Have you got a decent thermometer and are you checking his temperature daily?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Oct 2019 at 21:50

Thanks Lyn, he is now on day 5 and is not feeling too bad, he has worked today and intends to work the rest of the week. 

He runs his own business so has spoken to staff and he has also let his clients now. He is very aware of washing his hands and using skin sanitiser and I have been taking his temperature every day. I have also taken on all the pet care, cleaning and we are getting through tons of bleach. 

He loves his work but he does have to be sensible and pace himself, he has accepted being driven to appointments to help conserve his energy. 

I am so grateful for your thoughtful and pragmatic advice, the doctors and nurses are amazing but it is wonderful to hear from someone who has first hand experience of what it is like actually living with this on a daily basis. 

So much seems to be initially going into all this totally blind and finding your way day by day. 

Tomorrow is another day and from what you have said we must keep vigilant for signs of any infection. 

With love to all on this journey....

SunnyJane πŸ₯° xx 

User
Posted 29 Oct 2019 at 11:02

I have never posted on this sight, but feel compelled to say that my husband was instructed to take over-the-counter Claritin (an allergy med) while taking the Filstsgsam shot in days 3-8 post chemo infusion and found relief from bone and body aches he experienced from it as a side effect. The doctor admitted that they do not know exactly why it helps, but it does. Hope that is helpful.

User
Posted 29 Oct 2019 at 18:44

Hi Jane, thanks so much for that, my husband has been diagnosed and has had biopsies today, so obviously we won't know all the numbers and figures until we next see the consultant. The cancer is in one side and is contained, I don't know how relevant that is. We are a bit shell shocked at the moment, although I strongly suspected when the consultant rang us at home to say something had shown up on the MRI scan. Anyway, I have made my gorgeous man a chicken casserole and everyone knows chicken casserole can brighten up even the darkest days xxx

User
Posted 29 Oct 2019 at 22:53
Hi Jane,

Just been reading through your thread and your OH is more or less running 18 months behind me but thankfully I missed out on the Bladder Cancer bit!!

I wont clog up the post with my details please have a look at my profile for the nitty gritty.

Reason I am posting is that I noticed that after your OH's first Chemo session you mentioned that you had finished the steroids the day after. In my case I had to take 2 tablets a day between sessions and the 4 tablets at 12 hours, 3 hours & 1 hour before the next chemo session. Everyone was constantly checking that I had done this. My Onco even got quite annoyed that I hadn't been given enough tablets after my 1st session as it was 3 weeks and 3 days till my second session and they only gave me a 3 week supply.

Maybe I read your post wrong and he is still taking steroid tablets but if not I would check with you Med Team.

All the best

User
Posted 29 Oct 2019 at 23:25

Thank you Andy, it is interesting what you say about the steroids, when we went for chemo the nurses thought he was on a different regime but then agreed he should be taking 8 tablets the day before, 8 tablets the of chemo and then 8 tablets the day post chemo and then stop. These are all taken four twice daily for the three days. 

Then he moves onto Filgrastim day 3-8, when you have had no previous experience with any of this treatment you do what is asked of you. But I will ask the onco at next visit about the steroids. 

Best wishes

SunnyJane xx 

User
Posted 29 Oct 2019 at 23:29

Hi Colin’s Wife.... you cant beat some homemade chicken soup. I wish you and your hubby all the best. Take each day as it comes, love one another and remember to keep as positive as you can be. 

SunnyJane xx 

User
Posted 29 Oct 2019 at 23:33

Originally Posted by: Online Community Member

I have never posted on this sight, but feel compelled to say that my husband was instructed to take over-the-counter Claritin (an allergy med) while taking the Filstsgsam shot in days 3-8 post chemo infusion and found relief from bone and body aches he experienced from it as a side effect. The doctor admitted that they do not know exactly why it helps, but it does. Hope that is helpful.

Hi 

thats interesting my hubby takes Claritin for hay fever in the summer months. He has been experiencing terrible bone pain over last few days. Thanks for the information. 

SunnyJane xx 

User
Posted 29 Oct 2019 at 23:42
Quick update:

Came home from work tonight to find my hubby in bed. He looked flushed so I took his temperature which was raised. To cut long story short he is now in hospital overnight after bloods showed his was neutropenic and on antibiotics.

I am hoping this is more precautionary more than anything and he will be home again tomorrow.

He has been determined to keep working and despite being driven to all his clients today he came home exhausted and in a lot of pain in his back and a temperature. Bed rest tomorrow!!

With love SunnyJane xx

User
Posted 03 Dec 2019 at 15:00

Hello everyone, have been a way a while as life has continued to evolve around hubby’s treatment.

Update:

Following first chemo cycle he became neutropenic and had an overnight stay in hospital, sent home with antibiotics. These resulted in hepatitis and a subsequent weeks delay in his next chemo session. Symptoms were orange/dark brown urine and diarrhoea, yellow in colour and feeling very tired. By the third week he also started to lose his hair, so a couple of visits to the barber soon sorted him with a modern, almost peaky blinder style cut!

One week later than planned he went through his second cycle of docetaxel, as usual he has to take 8 steroid tablets day before, day of and day after treatment. These help to counteract any adverse reactions to the chemo but they also cause him to feel totally wired, unable to sleep, increased appetite and subsequent fluid retention. His mood is more boisterous and he loses his usual tolerance and patience. Two or three days after stopping the steroids he then has a night of being up all night, passing all the retained fluid and his normally calm temperament returns.

10 days after the second cycle he came home one evening after work complaining of feeling really cold, he had a temperature of 38.2 c and a phone call to the hospital resulted in him being admitted again for antibiotics. Bloods showed some liver inflammation and raised inflammatory markers, so doctors felt he was brewing an infection. We are hoping that on this occasion the antibiotics will not affect his liver (been prescribed different ones to last time) and his next cycle will go ahead next week.

Life in general is good, he is working between cycles but many would say too hard. He has had many different side effects – numb toes, itchy skin, nausea, hair loss, bone pain, fatigue, breathless, back pain, metallic taste, off food and alcohol etc etc BUT we remember and keep reminding ourselves this is a result of the treatment not the disease. The treatment is necessary to slow the growth of the cancer and this current treatment will be over by mid-February.

There are still days where life seems unfair but we never really and truly understood the saying “take each day as it comes” until now. We thought we did but it is not until you are faced with so much uncertainty that you truly understand the true meaning of the phrase. We work hard to smile everyday and find small things really funny. You’ve got to laugh!!

My learnings are: take each day as it comes, keep calm and patient and tolerant. The effects of the HT, chemo, Steroids, Filgrastim injections, constant painkillers, lack of sleep, mental worries about themselves, spouse and families and work all add up to making someone different to what they were prior to the diagnosis. We made the decision early on to talk about everything and that has worked for us but any wife or partner who is supporting someone through this must remember to take care of themselves. I can’t cope when I have days on end of no sleep, so get proper rest, meet your friends and take time out. That has been important for me and it enables me to be as supportive and loving and understanding as I possibly can be.

Sending all my love to everyone on this journey

SunnyJane xx

User
Posted 03 Dec 2019 at 16:38
Hi Jane I remember the sleepless nights when taking dexamethasone steroids whilst on Chemo last winter.

Bouncing around the house at 4am, crazy what these drugs do to our cancer club members.

User
Posted 03 Dec 2019 at 23:30
Keep up with the sunshine Jane you are a star..
 
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