Dads small cell cancer

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Posted 10 Oct 2016 at 10:41

TURNING THE PAGE AGAIN

We can't control the winds - but we can adjust our sails

User

Posted 11 Oct 2016 at 10:41

Dad seems no better so Mum is calling the GP again.Obviously worried for him and ive offered help although Mum assures me they have food and shopping xx

User

Posted 23 Feb 2017 at 18:57

I have been reading this thread and with your last post being in October, I can only pray that your dad is still holding on. My father in law, who is almost 74, was diagnosed with stage 4 gleason 10 prostate cancer February of last year. We just found out last week he now has small cell carcinoma. This is so heart wrenching. Today he went in and they are going to do a full body scan and MRI on his brain next week. His memory/thought process has gotten so bad. This small cell carcinoma is the worst news we could have gotten. We do know last year that his cancer had spread to his spine, bladder, ribs, lymph nodes and actually his whole pelvic region. He did a trial of Chemo a year ago and it almost killed him so now he is only on palliative care. They took him off of his xtandi today which I know is going to upset him. I can only hope that it makes him feel better to not be on it. Do you have any advice? He lives alone and has 4 kids. My husband is the only one he really wants but he gets upset when my husband corrects him. Most things my husband lets slide but when it is important things, my husband feels the need to explain and then his dad just gets upset. This is going to be a long road and I am praying that they can spare my father in law of terrible pain. :(

User

Posted 23 Feb 2017 at 21:24

Hi Lisalou, Cookiegirl hasn't been on the site since the day after her last post; I suspect her dad died within a few days as he was clearly in the very final stages of the disease.

I am sorry that your father-in-law has now been diagnosed with small cell; as you have obviously realised, it is a dreadful version because it is so hard to treat and the end can be very quick, especially if it has gone to his lungs, liver or brain. Has he been referred to a hospice or Macmillan service? If not, you need to get that done asap as they will hopefully have day care, alternative therapies, support for your husband etc plus generally the hospice teams are far better at pain management than GPs or hospitals are. The hospice will also have a social worker who can advise you on how to apply for benefits for f-i-l, which he is now entitled to because he is terminally ill. This money is to help pay for any practical things he might need (such as hand rails, mobility scooter, etc) or to pay towards any care he might need.

Edited by member 24 Feb 2017 at 14:43 | Reason: Not specified

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

User

Posted 24 Feb 2017 at 14:00

He has not been referred to hospice or Macmillan service (I have never heard of this. We are in the US so maybe that is why. I believe he would have to go through the hospice program here). He is very difficult man and will not do this until he feels he is ready. He is very bull headed and doesn't want people running his life. Honestly, he is in denial at how bad his cancer his. He does not understand that he now has small cell carcinoma. His oncologist is not really explaining it to him because he knows he will not understand. They have to put things very simply for him. My husband is his power of attorney so he is watching closely. I think after we receive the results next Tuesday on the scans my husband will have to take steps as you have stated above. I very much appreciate the information and I will pass this on to my husband. This is a terrible disease. You want your family member around as long as you can have them but you don't want to see the pain that is coming for them. You just hope and pray that it goes fast.

Edited by member 24 Feb 2017 at 16:05 | Reason: Not specified

User

Posted 27 Feb 2017 at 20:52

They were supposed to do an mri scan tomorrow but we had him in the emergency room this past Friday night. They did a head ct scan and said that they found nothing (I am assuming they were looking for signs of a stroke). Now the office is not doing the MRI tomorrow because they said they learned what they needed to know from the ct scan. They did however find a thoracic aneurism which they said is not terrible but to let his cardiologist know about it. So much going on and none of it is encouraging.

User

Posted 28 Feb 2017 at 00:28

Ah, I didn't realise you were in the States Lisa. Ignore most of what I said about benefits and Macmillan nurses; unfortunately they are UK things :-(

Re the head scan, they may have been checking that there was no sign of mets to the brain or skull - has he got some weird side effects? Whatever they were looking for, it is good news that they didn't find it, I think?

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

User

Posted 28 Feb 2017 at 01:17

Hi All,

I'm a bit in shock as my Dad age 71 was just diagnosed with small cell prostate cancer today. Everything I'm reading is not very positive! We see oncologist this week. It's such a shock as my Dad is so healthy and just had great blood work results always had normal Psa. I'm very scared! Does anyone know if any new treatment approaches? They are talking chemo, but are there any others? Thanks in advance,

User

Posted 28 Feb 2017 at 09:07

Hello bnelson and welcome to the site.

I don't know anything about small cell prostate cancer so cannot advise.

You are welcome to post on this page as you have, but it might be easier for you in the future if you start again with your own thread as sometimes a person's query will be lost among the original poster's thread.

I'm sure cookiegirl, lisalou and Lyn will answer you though

I'm just thinking that it might make the site easier for you to navigate back to your posts if you keep yours separate.

We can't control the winds - but we can adjust our sails

User

Posted 28 Feb 2017 at 10:00

I think Johsan is right, it would be better if both Lisa and bnelson started their own threads - it might be very upsetting for cookie girl if she suddenly starts getting notifications from the forum when she is probably still grieving.

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

User

Posted 02 Mar 2017 at 14:10

This thread has been so helpful to me just reading it and the stories and the struggles of everyone here helps me not feel alone. My dad has been diagnosed with small cell about 2 weeks ago, but they suspect that he has had it for the past 2 years or had some kind of the prostate cancer. he is 85 and i am the only caregiver as he is divorced and my brother is not very helpful. I lost my job 2 months ago which in some way is a blessing in disguise as i can spend more time with him and manage his doc appointments. I relate to LisaLou as my father is very difficult man, he does not trust doctors , thinks they just want to kill him or make money. We are here in Florida USA and I my self am having a very hard time dealing with all of this without breaking down .
Any words from you here will be helpful and i really don't have many people i can talk to :-(((
thank you again for this thread and the kind people on here.

User

Posted 02 Mar 2017 at 14:11

LisaLou ,

I am in similar situation with my father who is 85 and hard headed and stubborn and does not trust doctors and is in denial and refuses to accept his situation.

I would appreciate your comments and updates

User

Posted 02 Mar 2017 at 18:17

But ideally those comments and updates need to be on torebh's thread rather than this one. I am sure nobody would want to cause any distress to cookiegirl by keeping her thread live. She hasn't logged on for many months but it is possible that she receives an e-mail alert every time one of us posts anything :-(

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

User

Posted 11 Mar 2017 at 21:00

Hi everyone.good news is Dads daffodils have come up around the rugby club and Dad is still here to see them!! He has recently been in good health walking around etc.He and mum celebrated their 51st anniversary.unbelievable that he was given months to live in 2015.I wished I hadn't worried so much when he WS diagnosed in 2012..Yes he has been very I'll several times but he is still here thanks to chemotherapy. I hope his story gives hope to others diagnosed with this rare type.they thought he had the usual type of prostate cancer first for perhaps two yrs before the small cell type.it was mum who spotted the symptoms while battling her own stage 4 cancer. My heart goes out to everyone whose dear Dad's are suffering and I will keep my fingers crossed for you.Thank you Lynn for your continued support.Perhaps the newcomers should start their own threads that way anyone searching for support can gain more advice.love to all Paula xx

User

Posted 11 Mar 2017 at 22:01

Hi Paula
Despite the awfulness of it all I'm so pleased you all seem to have reached a comfortable place. Hope for everyone and a very well kept post for sufferers to follow. Your dad is so lucky to have such a devoted genuinely caring daughter. Best continued wishes
Chris

User

Posted 11 Mar 2017 at 23:01

Well that is wonderful news Cookiegirl, my heart sank when I saw how long it was since you had checked in.

Spring is such a beautiful time, and always filled with hope xxx

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

User

Posted 12 Mar 2017 at 05:20

Thank you for the positive update Paula.

Like Lyn I was concerned when I looked at new conversations to see you had posted so I was very pleased to see the update.

I know you must be so proud of your parents but equally, they have every right to be proud of their caring and supportive daughter.

We can't control the winds - but we can adjust our sails

User

Posted 12 Mar 2017 at 08:34

I have no idea why we've been so lucky.mum will be ten yrs since stage 4 diagnosis and Dad five if they make august.Living proof that cancer is a journey with so many unpredictable twists and turns. I don't dwell on the future now just celebrate the fact they ate here.Thank you all for your replies it means so much from people who understand xx

User

Posted 17 Mar 2017 at 01:19

Ahhh Paula,

So lovely to hear from you and with such a positive update like Lyn I feared the worst when you hadn't posted for such a long time. As you say your mum and dad are such an inspiration to so many hearing the worst news . I hope your new job continues to go well also.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 17 Mar 2017 at 08:43

Paula, just seeing you post that your Dad is still here has brought a tear of joy to my eye. So happy for you and family. I do hope your new job has worked out well now as the one you had a while back sounded like a horrible place to be. Keep posting even if it's just good stuff as gives us all hope.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 02 Apr 2017 at 14:27

Paula,

So happy to hear your dad is doing well. May i ask you how old he is ? I am sorry if you mentioned and i missed it. My dad was just diagnosed in January and i am devastated. they tell me at the most 6 months and I know you dad maybe an exception but i am very curious what treatment they used for him.

I would so very much appreciate any insight from you.

Thanks

Tee

User

Posted 02 Apr 2017 at 14:35

Dear Paula,

My dad was just diagnosed in January and although i know your dads situations is probably and exception it does give me some hope. may i ask how old your dad is ? my dad is 83 and they are saying he should do CHEMO and i am so afraid that at his age he may not take it. do you have any thoughts ?

bless you and thanks for sharing your story and journey

User

Posted 02 Apr 2017 at 14:36

Dear Paula,

bless you and thanks for sharing your story and journey

User

Posted 02 Apr 2017 at 14:43

Hi torehb, my father in law had chemo at the age of 80 and sailed through apart from not being allowed to go to the pub for 2 or 3 days each cycle which he found intensely irritating. It did cause some heart damage a couple of years down the line but he lived a very full and happy 3 years after the chemo. In his case, it was never confirmed he had small cell but that is the suspicion. The problem with small cell is that hormone treatments don't generally work so if your dad didn't have chemo, are they offering anything instead? The question of chemo or no chemo has to be weighed against a decision to just let nature take its course - not a happy thought.

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

User

Posted 02 Apr 2017 at 15:28

Lyn,

We are considering CHEMO but i think he is scared of the consequences. but after reading Paula i am thinking maybe we should try. the only thing is that my father is alone and now i have him living with me i am alone and don't have much support, so i think that makes a difference when you have many people around you. Anyway it gives me hope but my dad is not a good patient he complains and does not trust doctors and i think is going through depression which is understandable. but reading everyone here has been so much help and i look forward to following this thread and all its kind people.

xoxo

User

Posted 02 Apr 2017 at 16:02

I am trying to post a new conversation but its not working :-( or i can't find it. i named it SAMLL CELL PROSTATE CANCER USA
does anyone see it ? how do i look for it ?

User

Posted 02 Apr 2017 at 17:37

Better to stick with your existing thread and just keep updating that. The new thread you have started will appear once the moderators have checked it - sometimes than can take a couple hours, especially at the weekend.

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

User

Posted 04 Apr 2017 at 13:51

After talking to another oncologist for a second opinion today he made me feel as if in my dad's case its best to let nature take its course. he would not put his father through it, and that is what i asked him. :-( oddly enough dad felt very good about his answer as i think it was a relief for him not to have to do CHEMO.

User

Posted 10 May 2017 at 21:54

Hi I'm so sorry to read. about your lovely Dad. Mine has done far better than expected although he had had some bad times and many infections.

Sadly he has been very unwell the last two weeks.I came home from hold to find he had been taken unwell and become exhausted and taking his liquid morphine for pain.Twice he could barely move and thought this is it.....this weekend he was confused and his arms were shaking involuntarily.not eating or hardly drinking.Mon I heard the hospice nurse had said this is what we were expecting.she insisted he saw the doc so the poor man had to travel to the surgery!!! He has an I fe tion which has become borderline sepsis.Today he had more colour and moved around.we sat in the garden.Perhaps this is an infection he can shake perhaps not.I made a minor mistake at work and when I pointed out I had hardly slept for concern over dad I was told why worry when you know what the outcome will be....angry or what.

Day for day. Love to all and thanks for all the support and cheering my father on xx

User

Posted 10 May 2017 at 22:27

Always think about you. Hang on in there girl. And Karma will get the prick that made that comment x

User

Posted 11 May 2017 at 01:44

Fingers crossed that he rallies again Cookie Girl - he has pulled it out of the hat before.

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

User

Posted 11 May 2017 at 06:15

Thank you both we thought last week end he was in trouble.so pale and exhausted.Weds he seemed more like himself.You are right Lyn he has been hospitalised a few times and recovered.A family member told me his bowels went last week.I'm not sure if it was a one off though.Mum is being so strong. Love to all
Paula xx

User

Posted 11 May 2017 at 08:18

Sorry dad is going through the mill again cookie girl and I am really sorry that you don't get enough support from your co-workers.

What goes round comes round. I wonder what the future holds for the person who made the tactless comment.

I hope dad can get over this latest problem.

Torehb, I am also sad to read your latest update but at least you all know where you stand now and can spend the remaining time re-living good memories and making more.

Keep strong both of you. Your dads have children to be proud of

We can't control the winds - but we can adjust our sails

User

Posted 11 May 2017 at 21:29

Hi Cookiegirl,

I have got everything crossed that dad can come through this infection , more than most I understand the ups and downs of this disease ( the roller coaster ) at this stage one minute we are up and then we are down with not much warning in between.

Your dad has been remarkable he has fought worse .

Sending you all lots of love .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 May 2017 at 09:45

Quick update Dad is feeling much better in himself.He did have a near fall in the garden as his legs are unsteady.He seems to be taking regular oramorph and loads of other pills.
Last weekend I didn't think he would be here now.He even managed some food.He is an amazing man who refuses to give up.Strange to think he could barey move last weekend.
The lady who !made the comment s own parents died of cancer and said she fell apart when her dad died.
Torenib so sorry about your lovely Dad.I hope my Dads almost five yr survival has given you hope.Try not to google anything and enjoy the time you have.I hope you have longer than predicted like we have.
Thank you all for your support it means so much from people who know what were going through Paula xx

User

Posted 01 Aug 2017 at 09:06

Well Dad just had another birthday....five hrs since he was told he had small cell cancer while supporting Mum who was having major surgery for advance d cancer.
He was scanned to see if radiotherapy would help with his back pain caused by the cancer in his spine.The consultant told Dad he couldn't believe he was still here two years since being given months this live.
byway

Well the cancer is everywhere now as I would expect and until recently he was driving short distances and using his walking frame.
This last week he has deteriorated badly.The lymphodema that used to reduce with diuretics has worsened.His arms are black and bleed at the he slightest knock.
He was sent for treatment for the lymphodema by compress and compression bandages.He now can't do the stairs as his legs are so swollen and leak fluid into his clothing.The hospice nurses are going today to see him and he is asking for a hospital bed as he has been sleeping erraticly in a chair downstairs which isn't ideal and the fluid is built up in his abdomen.
Does anyone know how long it takes to organise a hospital bed and how long he may have once he is bed bound?
Typical Dad is still in good oh enough spirits he misses getting out and about and realises he has had far more time than expected.Mum is being exceptionally strong.....love to all Paula

User

Posted 01 Aug 2017 at 10:31

Hi Paula
Lovely to hear from you as ever , even though tragic circumstances !! I can't advise on your issue but am sending wishes and strength to all of you.

User

Posted 01 Aug 2017 at 10:51

Hi and thank you.I haven't been on here lately as I've been doing 60 weeks at work.I have quit to spend more time helping my parents while I can and have a lesser hr job locally as I didn't see my lovely dad for three weeks.
maybe there are no answers and I hope the hospice team and gp can help my dear Dad.
Writing on her helps enormously as sadly we are not alone on this journey and all too many lovely men and their families have been where we are now.
On a positive note Dad had given this disease a run for its money and had time to recently buy gifts for all 13/ of their grandchildren. I thank each and everyone who has cheered him on from the sidelines and offered me support too xx

User

Posted 01 Aug 2017 at 18:37

Dads been rushed to hospital by ambulance suspected spinal cord compression.

User

Posted 02 Aug 2017 at 00:19

After all he has been through! I hope they are just being cautious and he is home again soon.

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

User

Posted 02 Aug 2017 at 06:21

Thanks !ynn so do I xx

User

Posted 03 Aug 2017 at 00:11

From someone who has been here almost from the start of your journey I wish you love and strength through this next part. Your mum and dad are an inspiration to so many .

Lots of love

Julie

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Aug 2017 at 15:51

Dads still being treated in hospital Today he gets transferred by ambulance to a cancer specialist hospital for radiotherapy on his spine.They are trying to sort his leaking legs out and the hospital bed has arrived at Mums.
Five whole years since being diagnosed now.Dad is tired but in good spirits.I started a new job today which kept me distracted.
Thank you Julie for all your support xx Paula xx

User

Posted 03 Aug 2017 at 22:47

Paula

I don't come her so often now but wow, your dad! What a man. I know things aren't great but he is a brilliantl example of survival of small cell, which we all collectively breathe in when we see it mentioned. May he continue to outlive all expeditions xxxxx

Love Devonmaid xxxx

User

Posted 08 Aug 2017 at 07:50

Update....Dads still in hospital and going to another for radiotherapy.He has oramorph for pain and has injections in his stomach to reduce his deep vein thrombosis.According to blood tests it is still there.Stressful times as I started.a.new job so haven't seen him yet.He was told that a re went MRI that the cancer is everywhere.which we would suspect with two hrs no treatment.love to all on here xxx

User

Posted 08 Aug 2017 at 08:15

So sorry about this latest upset cookiegirl. I hope the new job fits in well with your need to support your mum and dad. Thinking of you

We can't control the winds - but we can adjust our sails

User

Posted 08 Aug 2017 at 10:33

Feeling for you Paula
Trying to balance the lot. Easy to say , but I hope you can stay strong for everyone. You ladies seem excellent at coping with things xx

User

Posted 08 Aug 2017 at 15:23

Paula,

Just to let you know I'm thinking of you and your family at this time. I don't feel very good with words at the moment but I just wanted to let you know I care.

Steve x

User

Posted 08 Aug 2017 at 22:37

Thank you all so much with all you have to cope with yourselves your support is very much valued.I feel qguilty that I don't fully follow all of your journeys.I post on here to get it off my chest and also to hopefully give others hope.when I first came on here the outlook was months not hrs.The poor husbands and fathers of others went too soon.
I don't.want to see.My lovely.Dad.suffer much more however he has had months if not years of relatively.good health.
He has raised awareness for prostate.cancer too.
I only hope our family and the medical team can help him in this last chapter to return home again and be cared for by us xx

User

Posted 09 Aug 2017 at 06:04

There's no need to feel guilty cookiegirl, although I do understand how you feel.

We all have our own paths to follow, for some of us it's not such a wobbly journey and we have an element of time available to enable us to share.

Even those among us who don't have that luxury will (and have and do) offer what we're good at. A listening ear and a shoulder to lean on.

So, rant away my dear and offload some of that anxiety.

I am sure that you will all do your best (and that is all you can do) to make dad as comfortable as can be during the closing chapters. You care and you're there, even if it isn't as often as you'd like it to be. I'm sure your dad appreciates that.

None of us are superhuman cookiegirl and can only do what we can

We can't control the winds - but we can adjust our sails

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