Update & advice please, what could this pain be...

Hi,

Hubby has sclc (2015) & secondary liver & tummy nodes tumours, (March 2017) . Due to spread of lung cancer to liver and being to weak to have the full amount of combi -chemo, they have been giving him half doses of chemo. He was due to have 6 half cycles of chemo but has had only 4 due to his liver blood test results and low bone marrow and being weak himself, plus his been in & out of hospital and had blood transfusions & been on potassium drip etc. They said the cancer wont benefit from the chemo, so they will review it at later stage. Last ct scan revealed some shrinkage in lung & liver. Now this week he started to get a dull ache under right rib and his not peeing much during day (any ideas what could be causing this pain?)

He controls pain with strong painkillers & if pain is really bad morphine. I contacted Oncologist secretary to let him know, We were surprised oncologist didn't want to see him at clinic to find out whats causing pain & peeing problem as he doesn't go much during the day, and we are thinking the worse, like you do . My hubby thinks liver cancer has grown again in a week. So we contacted hospice nurse who put him on the low dose of morphine for pain. She's been more helpful than anyone from the hospital throughout his cancer journey. She's away till early next week, but has given us a number to ring if hubby needs to see Doctor over weekend. It's been such a worry for both of us. It's so upsetting to see hubby in so much pain and discomfort as you feel so helpless and his been through so much. His such a strong willed man and I love him so much. All he wants is to have some quality of life for the time he has left. We have made plans but they have been put on hold.

Update on P.A.L.S complaint, we have heard nothing, didn't expect to. But it would of been nice to have apology from Palliative nurse. But it did help me to heal and move forward. As for the other oncologist who made the mistake of not looking into fluid problem and just laughing at my hubby saying ct scan was fine and don't worry, when in fact cancer had spread elsewhere in 8wks, we refuse to see him now. We both have lost complete faith with that hospital.

But I still have my faith in God, he is looking after us in some way & his helpers the Angels to.

I find this site very helpful as we are all on the same journey "trying to cope with cancer".

Love and Blessings x

[jillygirl]

Hi betty, is hubby drinking plenty?

I am no expert but it sounds a bit like kidney problem.

I would contact doctor if no improvement.

Try drinking plenty of water see if it helps.

☺

[Hidden in reply to jillygirl]

Hi Jillygirl,

Yes he is drinking plenty, mostly water as his taste buds have change since having chemo. His had no blood in urine and pain only started as dull ache on Monday and gradually got worse. Yes will contact someone if it doesn't improve.

Thank you.

Have nice weekend,

[Edking]

Hi Betty, has he has sodium levels tested? It could be water retention due to SIADH, but I would have expected the docs or nurses to pick up on that.

Let us know how you get on. Sorry to hear about the poor experiences you have received, hope it has improved.

[Hidden in reply to Edking]

Hi Edking,

Hubby takes 2 diuretics tablets daily, His been on diuretics for many years due to quad heart by pass (20yrs ago), Also his was on steriods for long time but stopped in May.

I haven't heard of SIADH. I will mention it to my hubby.

Does SIADH cause pain to.

Thank you

Have a nice weekend

[Edking in reply to Hidden]

Hi Betty,

SIADH is quite common with sclc. It was one of my initial symptoms. I did not pass much water during the day but in the early hours of the morning my bladder seemed to be always full causing many trips to the loo. Of course the medics blamed me, saying I was drinking too much fluids especially before bedtime, which I wasn't, I was getting so little sleep due to waking with a full bladder I stopped drinking anything at 6pm. Quite often I have an ache just under the bottom rib on my right hand side (ache is more central than right round on my side if you know what I mean), there has been no explanation for this but it has been going on for at least two years. I have often wondered if it is related to retaining fluid. After my diagnosis the relationship between my symptoms (urinary) and low sodium blood test result seemed so clear I wonder why no one picked up on the connection with lung cancer, especially with the fatigue and other symptoms.

Hope you are coping OK.

Ed.

[Hidden in reply to Edking]

Hi Ed,

I told hubby what you had said, he said he will look into it, as he hasn't heard of that before.

As for me coping, it is very hard & upsetting at times. But I have to be strong for my husband.

I also speak to my family on phone or Skype as they live far away. I have friends to who I can talk to. They are all my support team

I also have my faith and I meditate to.

If I get to stressed I play songs and do some singing to them. Behind closed doors thou. ha ha .

Love and Blessings

.

[Edking]

Just a thought, has he had electrolytes blood test done recently, since these symptoms, these blood tests normally cover Sodium which if low can indicate SIADH which causes the low sodium due to holding on to water.

They sometimes also use this for kidney function, so would also help with Jillygirl's suggestion of kidneys.

Take care

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Betty444

Sorry to hear your Husband is in pain. If the Hospice Nurse is not back perhaps call the number she gave you, which you may have already done as you posted this two days ago. The pain management may need to be assessed frequently to ensure your Husband has optimum comfort and as you say quality of life which is so important for you both.

There are guidelines in place for pain management and also considering any breakthrough pain that your Husband may be having (spontaneous pain or casued by triggers e.g mobility) Some find it helful to keep a diary of the pain, which can help the assessment or isolate any triggers that make it worse. Your Hospice nurse sounds very supportive and caring and am sure will direct and assist in the total comfort for your Husband.

Call the GP if your Husband is having problems passing urine, and if his abdomen is swollen or distended , it may indicate he is retaining urine. This can be treated but needs to be assessed by GP or if you feel he is unwell to either take him to A & E or call an ambulance.

Please make sure you be good to yourself and have plenty support.

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the best

The Roy Castle Support Team

[Hidden]

Took hubby to see Dr at hospital as he was in pain, they did bloods, the results came back stating his got infection going on in his body so his on high dose of antibiotics, his got lesions on his liver, Dr said its probably caused by dead cells caused by chemo. So his been put on Steroids to help with the inflammation. So once both tablets start to work his pain will ease up. For more pain relief to contact Palliative nurse. Ct Scan revealed tumours in lung & liver have shrunk some more since last chemo treatment. At least it's put our minds at rest for time being.

Love and Blessing x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Betty

Thanks for the update and hope your Husband is more comfortable now. If you wish to discuss anything you can call us on 0800 358 7200

All the best

The Roy Castle Support Team