Dads small cell cancer

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Posted 06 Nov 2015 at 00:04

Dear Paula,
Thank you so much.... your words mean a lot to me. I have so much support from you guys,just reading your warm replies, thank you to all of you.
Paula, when you tell what you dad had to eat today- it breaks my heart! I know what you mean. Watch your loved one going down- and all the sudden - he (she) had a good meal!!!!! It makes us sooo happy!
Paula, enjoy every moment with your dad, every minute! That's what I try to do!
My husband lost 40 pounds since July 4th. Being healthy man, 210 lb- went down so fast!
I will pray for your dad, as I always pray for my hubby.
He is on carboplatin and etoposide too. This type of chemo they use for small cell lung cancer too.... And my husband has hormones too.
All I found online- that he might have not even a year to live. I cry and cry and cry- but not in front of him. Thanks God, he is not computer guy and ,probably, don't do as much research as I do... Well may be he knows too and just not to show it to me. What's a wonderful man he is! Cares about me even being so ill!
We live in small town, North Carolina, doctors are good, but it's not top line cancer center. We, however , get in touch with two top cancer centers in USA, and two doctors we talked to, agreed with treatment protocol. My husband is old school guy and he didn't want to go to trials. We(well, I) found one in USA for small cell prostate cancer- Aurora inhibitor, second phase and stats is not very encouriging.
Type of cancer your dad and my hubby have----- rare!!!!!! I wish I could find the cure. All my research online----- no luck.
Will have his second round of chemo Nov.11th. and radiation after that. His first chemo was relatively good, he is having some neuropathy, which he had before the treatment any way. That's when his primary care doc and his team treated him with neurological disorder, which made his half - disabled, he is walking with walker now. It makes me soo mad! This is America, dude! Not third world country, where they don't have good doctors. What did you do to him???!!!!
He was so independent, was running his own business and now----- he is my baby, I help him bath, dress, cary him around. Hard on me but ten times harder on him. My poor husband, he is great man, his spirit is up, and he is going to beat the cancer!
Hey guys, sorry if my English too American for your British:))) That's all I know. I am Russian girl, lucky enough to meet this wonderful American man, fall in love, marry, learn American English---- and ---- boom, that beast hit him---- CANCER! I had four wonderful years with him! And love him so much. I just don't know how to help him.
Let's stay strong, Paula. Pray for our loved ones.
And thank you so much for supporting me.
I don't have much help, even though my husband's sons live next door- they have they own lifes, young boys, just got married, I understand- but----------- IT's YOUR FATHER!!!! The best father I've ever seen, especially comparing to my ex and my own father, he deserves better for all he did for them. WELL, God will judge them, not me.
Thank you guys! All I need just warm words and some support.

User

Posted 16 Nov 2015 at 20:25

Dads on a good bit at the moment.the blood transfusion has perked him up and apart from some backache he seems like his old self which is great.He has his wheelchair and my sis got him a walking frame for when he needs it.Dad even drove to the shps with his blue badge on board fast tracked through so he can nip in for essentials and at least get out of the house.love to all and i hope things are good for you myhusbandswife Paula xx

User

Posted 16 Nov 2015 at 21:43

That's good news Paula.

Hope it continues for you all

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

User

Posted 17 Nov 2015 at 14:07

Hi,

Pleased things are going better for your Dad. Nice that he can get out more.

Steve

User

Posted 07 Dec 2015 at 21:54

Hi Paula,

Thank you so much for sharing your story. My dad was diagnosed with small cell prostate carcinoma last week and I have desperately been trying to find support and/or success stories. His cancer is currently in his prostate and bladder and he will have surgery to remove both on the 28th of December. I wondered how your dad came about his prognosis? I had no idea how aggressive this cancer type was until I started researching today. So heartbreaking :( :( :(

Sending your family love & strength from Colorado!

Kristi

User

Posted 08 Dec 2015 at 09:01

Hello Kristi and welcome to the site.

I am so sorry that your dad has this version of Prostate Cancer.

Paula in particular has up to date details of this so she will be able to compare notes with you.

There will be other members on here to offer support I'm sure.,

In the meantime, as I say, welcome, and best wishes

Sandra

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

User

Posted 08 Dec 2015 at 16:28

Thank you, Sandra!

This seems like such a warm & supportive group. I'm so happy to have found you all as I have felt like a babbling mess the past few days. Knowing others have or are going through the same thing is reassuring and comforting. The unknown of what lies ahead is beyond scary.

Best wishes to all!

Kristi

User

Posted 10 Dec 2015 at 20:01

Hello Kristi

I'm so sorry to hear that you have encountered the small cell version of cancer. I'm not even sure it's actually prostate cancer (although it affects the prostate), I had the idea that it stems from the lung but that doesn't mean you shouldn't be here by the way, you are very welcome. I know a couple of others whose husbands had this form of cancer and know that the treatment was a different kind of chemo than the PCA sufferers get. I must admit Paula's dad has done so well (despite everything), and I can only hope the same applies to your case.

I will ask my friend if there were any resources she used while her husband was going through this, in case there is anything out there that might help. I do think her support came from here though.

Though most here know little about small cell cancer we will always support you, please lean on us as you need to.

With love

Allison xx

User

Posted 16 Dec 2015 at 16:00

Hi kristi Dads caner is mixed adenocarcima and small cell he put off treatment as mum was battling stage 4 cancer.This was 3 yrs ago and peeing alot was his symptom.Miraculously he has had chemo twice and radiotherapy stopped in march and he is still here !!.Firstly they thought he had regular slow growing prostate cancer and probably had it for 2 yrs.His cancer is in his prostate,bladder and spine.today he has gone to eat at the new restuarant where i work.He has a hospice nurse on call as he has had repeated infections.I hope your Dad responds as well as mine has to treatment.Feel free to ask anything,Best wishes to you and your family and this is a great site .
Wishing everyone a Merry Christmas and im thankful to have my parents around for one more Paula xx

User

Posted 16 Dec 2015 at 16:54

We are wishing you a great Christmas that you will always remember Paula.
Chris and Elaine x

User

Posted 16 Dec 2015 at 17:25

Merry Christmas to you too Paula.

I know that you'll make much of this Christmas, hopefully building memories for the future.

Take lots of happy smiling photos of your dad and you !

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

User

Posted 16 Dec 2015 at 20:47

Chris and Elaine and Sandra ,Alison Lynne Steve and Mo and all you lovely people (too many to mention)
. Thank you so much for all the support and advice this yr as we continue to help Dad.I hope he gets a bit longer in his present condition and hope his journey is an inspiration to others that even when the cancer has reached the lymph nodes chemo can be effective in this aggressive type.
On an amusing note he bought a real xmas tree with white lights for the garden as they took the fir tree out this summer and turfed over the garden to make it easier for mum to get the grass done when he isnt here and he still is :) This will be a "bonus" xmas not a "last one" xx

User

Posted 01 Jan 2016 at 20:21

Happy New year to you all
,christmas was lovely with lots of photos mostly taken by dad but plenty with him in.he has been needing his stick to walk about and has pain in his leg now.the Gp thinks he has fluid retention which seems to come and go.His face looks puffy however he is in good spirits.new yr seemed emotionally harder to think of given Dads yr in march,I know these prognosis mean an estimate it just seems more real if you know what i mean.
Onwards and upwards the next goal is their 50 th anniversary in feb xx love to you all

User

Posted 01 Jan 2016 at 20:35

Paula

goals are good and a 50th wedding anniversary is a monumental one! I know all of this is probably so much easier for you to deal with now that you have a sympathetic and understanding employer.

As long as your Dad is feeling OK, eating as well as he can, staying mobile and having hope then why should anyone doubt that he will make that goal.

Happy New Year to you and yours

xxx

User

Posted 01 Jan 2016 at 20:47

Good god !! 50 yrs together. Now that has to be a love match. I'll leave that spare bottle of Cava in the garage.
Best wishes
Chris

User

Posted 01 Jan 2016 at 21:50

Having goals is a fantastic thing, I know it doesn't always work but it can be a really lovely incentive to keep going. I think a 50th anniversary is wonderful. As it happens my sister and her husband are celebrating their 50th today, she married at 17 and they said it wouldn't last.

Happy New Year

Love Allison xx

User

Posted 02 Jan 2016 at 11:46

I know water retention is an end of life symptom or can be.How much of a sign is it that things are progressing and do steroids cause it too ?

User

Posted 02 Jan 2016 at 15:28

Hi Paula, do you mean water retention or urinary retention?

Steroids can cause a person to look bloated but I don't think they are particularly associated with water retention. In advanced PCa the water retention is usually because the lymph nodes are too damaged to function (lymphodema) and/or as the soft organs like kidneys fail. Water retention is also an indicator of heart failure and must be taken seriously - if not already done so, get dad checked by the GP or hospice nurse. When Stan was in the final stages, his odema started at the ankles but progressed up his legs and then the whole groin area so it was hard to see where his legs started and his penis became swollen as well. The doctor drew a biro line across Stan's upper chest and said if the swelling reached the biro mark we must phone 999 immediately.

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

User

Posted 03 Jan 2016 at 00:33

Thanks Lyn i meant water retention as in swellling.I think Mum is fed up as no one is doing much and my husband took him for his blood test and the gp said his bloods were better than last time.Just seems weird he can barely walk or stand for long and he goes back next tue. xx

User

Posted 03 Jan 2016 at 00:46

Ask the medics to check that it is water retention rather than bloating from the steroids - the difference in very basic terms is a) is the face moon-like (steroids) or b) when you push the skin in the swollen area, is it doughy (odema)

Might also be a good idea to start tracking how much he drinks and how much he wees.

Edited by member 03 Jan 2016 at 00:48 | Reason: Not specified

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

User

Posted 03 Jan 2016 at 11:39

Hi Paula

water retention is a very common problem in cancer patients, as Lyn has said it is very important to establish if it is Oedema or steroid bloating. Judging by previous information I would be inclined to think that it is Oedema.

There are several causes of this, Lyn has mentioned and explained Lymphodema and how to tell the difference between this and steroidal bloating.

If your Dad has swollen legs or arms it is a really good idea to ask your medical team if he should slightly elevate these whenever possible, so legs on a footstool or, if you have a recliner,raise the lower support. Keep his arms up on the arm rests of the chair away from his sides.

At night in bed he may need to put a small pillow below his legs or arms.

There are also special elasticated stockings, or bandages that can be used to gently push the water back from the area just below the skin back into the blood vessesls so that it gets transported away.

It is vital that he continues to take in fluids and as Lyn also says checking his urinary output is an indicator of how well Dad is processing fluids. Your medical team can advise you how best to do this and what quantities you should be aiming for.

One of the later stage issues is when protein levels (albumin) become very low this is another potential cause of water retention.

If Dad is retaining water he probably will be finding that standing and moving about is harder, try to encourage him to do a little but often.

Right now just having you nearby to give him and your Mum as much love and support as you can will be the best tonic you can give.

You are in my thoughts

warmest wishes

xxx

User

Posted 04 Jan 2016 at 20:10

Thank you both he has anther blood test this week.He has slept on the settee a few times as the swelling does go down a bit when his leg is raised,As far as i know the pain is at the top and sometimes his hips.I hate to see him shuffling around but i guess he needs to keep moving,Mum said standing is hard for him.
My son and daughter are going to see him with some much loved toffee tomorrow so that should raise his spirits.He cant drive due to his ooramorph he has been taking.We offered to take the xmas tree down but perhaps they both wanted to do it in their own time,
I may call the hospice nurse if he is still struggling if mum hasnt, many thanks Paula xx

User

Posted 07 Jan 2016 at 07:20

GP and hospice nurse viisited dad.He has to have elastic stocking s and diretics.His protein in his blood is low too.Gp told him he should see his birthday in July but ive no idea if she was giving him hope.Lets see what these new changes do love to all Paula xx

User

Posted 16 Jan 2016 at 13:48

Good news,Dad has diretics and has been measured for elasticated stockings and has felt so well he brought mum to the place i work for lunch,Mum had her onco appointment and is ok and goes back in the summer,they have planned a 50th wedding do at a nearby hotel as dad has been advised not to travel far so 40 of us (large family ha ha) are going for a meal for a fantastic couple on a day cancer cant spoil.i never in a million yrs thought either would make it and so we have 5 weeks to keep dad well.It is also mums birthday,the hospice nurse doc and nurse have been coming out to Dad,Please keep your fingers crossed for him and Mum,love to all Paula xx

User

Posted 16 Jan 2016 at 13:55

Paula that's awesome. I'm delighted for you all. There will be 40 of you physically there and then all of us mentally there with you.
I LOVE a party whoop whoop xx
Chris

User

Posted 16 Jan 2016 at 14:06

Party party well done to you all
Regards
Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 16 Jan 2016 at 17:06

So pleased for you Paula. I'll keep everything crossed for all of you. x

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

User

Posted 16 Jan 2016 at 20:36

Glad Dad is more comfortable. Fingers crossed for the Party !! Best wishes,

Fiona.

User

Posted 16 Jan 2016 at 20:56

Paula

after all you and your family have been through this is lovely news, Lots of nurturing, love and caring now with just 5 weeks until the party. You all truly deserve to have the best party ever.

I will be there with you in spirit every step of the way

xxx

User

Posted 17 Jan 2016 at 00:51

Hi Paula,

Really good news.

I hope the party is really special for you all.

You deserve happy times.

Steve x

User

Posted 17 Jan 2016 at 10:02

Ahh thank you all it means so much,We havent had any family weddings or parties in yrs,Dad is a real trooper organising it,

Mum is in her element choosing new clothes ha ha,Lots of family photos will be taken and Dad will be in the pics not behind his beloved camera,Best invitation ive had ever :) xx

User

Posted 20 Jan 2016 at 22:52

Fingers and toes crossed here for a memorable day Paula

Lots of love

Allison xxx

User

Posted 21 Jan 2016 at 22:06

Ahhh Paula, you and your family so deserve something to look forward too. Happy planning .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Jan 2016 at 10:33

Golden sugared almonds are on order and Mum let slip she has contacted the local council and the "friday club" who are men who keep the grounds of the rugby club where my brother and nephew play and dad is part of helping out and taking hundreds of photos for years.Between them they have filled the roundabout opposite the club with daffodil bulbs as a memorial to him.I think it is lovely and he is hoping to see them flower.
All lovely things that are a distraction from all the medical stuff of the last few years.xx

User

Posted 16 Mar 2016 at 19:29

The gplden wedding do was a huge sucess.My nephew 9 played a clarinet and one of my brothers who is an actor and singer sang forever young which almost had us in tears !!.Dad thanked everyone including docs and oncologists for all their support.The meal was lovely and the last month Dad has been going to buy bread again and following rugby.

His daffodils surround the local rugby club about 300 Mum had planted.I cant believe he is so well.the hospice nurse comes out every 2 weeks now to look for changes and offer support.Love to all on here and i hope the sunshine is lifting a few spirits xx

Paula xx

User

Posted 16 Mar 2016 at 20:30

So pleased to read this Paula - every happy moment gets tucked away in your hearts for safe keeping x

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

User

Posted 16 Mar 2016 at 20:33

So lovely to read this Paula, thrilled that the party went well too. So happy to hear that dad has improved,

With love

Devonmaid

User

Posted 16 Mar 2016 at 20:43

Paula

big smile from me

xxx

User

Posted 16 Mar 2016 at 22:21

Wow Paula
Time flies by. I'm so glad your party was a success and that your dad is good. Warmed my cockles it has xx

User

Posted 29 Apr 2016 at 14:56

Hi all i have a quick question
.Dad has been really well the last few weeks and ive been really busy at work.However this week he pricked his leg and the fluid wouldnt stop coming out.The gp sent a nurse who said she usually only visited bedridden patients.she bandaged him up and he has a diretic pill each day now.His hands are leaking too and bleeding with dark patches on them.He has a sore thumb that hasnt healed in weeks despite being cauterised.
Is this leaking anything more significant as he feels well and has a blood test every couple of weeks to check kidney function as as a tumour was found there last yr.
He is assumming it is the cancer however we have no experience of this.His skin tears easily and he is on lots of pills.i think it was 26.Love to all and i hope the bank holiday is a good one for you and your loved ones. xx

User

Posted 21 Sep 2016 at 18:27

Dad has had a great few months getting out and about and welcomed another grandchild too.He is now in hospital with a leg infection.I think the thinning skin and water retention are the cause.He is on a drip and the infection did get a bit worse.I have everything crossed he will be home soon.Love to all on here xx

User

Posted 21 Sep 2016 at 18:48

Hello Paula, Thanks for the update.

Glad that dad had improved enough to get out and about a bit, although not so good that he is now in hospital with a leg infection. I hope he is being well looked after.

I bet he was dead chuffed with the new baby.

Fingers crossed for an early homecoming so that he can enjoy what little is left of the summer weather (if you have any where you are that is!!)

*******

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

User

Posted 21 Sep 2016 at 19:01

Hi Paula
Glad things are relatively ok. Really great to hear from you again x

User

Posted 21 Sep 2016 at 20:03

Thank you both.Ive been really busy with my new job so not much spare time.
I hope Dads journey so far will give hope to anyone diagnosed with small cell and adenoma ? prostate cancer as when he was diagnosed 4 yrs ago all i could find were people whose husbands and fathers died months after diagnosis.:(
I apologise for not replying other peoples threads too although i wish everyone well on their journey xx Paula

User

Posted 27 Sep 2016 at 06:05

Dads still in hospital with an infection in both legs.His temp is better and he sounds in good spirits.A few antibiotics have been given by IV.They did a ct scan which went wrong when the dye went into his hand rather than the vein and caused his hand to swell so they cut his wedding ring off,
we are still unsure when he will be discharged yet.Love to all Paula xx

User

Posted 27 Sep 2016 at 06:09

Thanks for the update Paula. Dad certainly isn't having it easy is he, bless him.

Make sure you take care of yourself while taking caring of everyone else.

*****

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

User

Posted 09 Oct 2016 at 21:38

Hi Dads stll has an infection and swollen legs,His steriods have been stopped i believe and statins too,Mum called the hospice nurse as Dad was shaking with a temp,They went out in the night to check on him and change antibiotics,
Its been a month of taking antibiotics all in all,Obviously i am worried,Love to all on here.

User

Posted 09 Oct 2016 at 22:42

Hi Paula,

Fingers crossed that this Can be sorted I totally understand that you are worried . Hoping the new job is happy to give you time out to visit your dad.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 10 Oct 2016 at 08:45

Hope the new antibiotics kick in quickly Paula. IT must be a terrible worry for you all.

XXXX

Sandra

******

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

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Posted 10 Oct 2016 at 10:40

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