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Thread: Steroids??

  1. #1
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    Steroids??

    Yet another question.....

    Is there a point in palliative care when steroids will cease to mask symptoms of lung cancer? My Mother in law takes 2mg of Dexamethasone daily. Initially all her symptoms seemed to disappear. her cough stopped, the appetite returned, energy levels increased, general mood lifted. I have noticed over recent weeks that her breathing / wheezing has "changed". she makes weird "whistling" noises and struggles on exertion (we do use a wheelchair)
    just wondered if anyone can advice Thanks in advance x

  2. #2
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    Hi Guineapig, In my Dad's case, eventually the magic effects of the steroids were not visible. He was weaned off his higher dose after radiation and lost all his appetite and could hardly stay awake during the day. They put him back on a low dose (2mg) for as long as he wanted to take them. Eventually the effects of the cancer wiped out the effects of the steroids. He was tired again, became weaker and lost muscle mass. Seems like your mother in law is experiencing the same thing.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  3. #3
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    One more thing Guineapig, sometimes it's easier for members to follow your story if you just stick to one thread. That way they can back track through your thread to jog their memories. Just a thought.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  4. #4
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    Thanks for all comments. Have had pretty bad few days my MIL seems to have aches and pains(especially in legs and back) that won't ease even after taking her usual paracetomol? Also her breathing sounds awful. Very wheezy. Her energy levels seem to have dropped so much in such a short space of time (3 days). have suggested a visit to GP but she says it;ll pass. Her eyes seem weird to me too, sort of jellyfied (sorry only word i can use to try to describe).
    Have just dropped her home from a shopping trip she seems okish in herself - just can;t stop thinking about her ;( x

  5. #5
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    Hi Guineapig...I know, it's all so heartbreaking to watch them decline. When is the last time that she had a scan? I was just wondering if it has spread to the bones causing the back and legs to ache. If her current pain medication is no longer strong enough to manage her pain, it's time to talk to the doctor about changing or increasing her medication. The pain medication may be causing the weird eye looks. My Dad's got a little glassy after he had taken any narcotic medications. As was mentioned earlier...expect the unexpected. This fall could be the disease progression or it could be the after effects of her chemo. If it's the after effects, she could bounce back. You will hear many here refer to the roller coaster because of all the ups and downs we see frequently with this disease. Is she taking any inhalers to help with her wheezy breathing. They can be helpful for a time. We found it useful to see the doctor as each new symptom popped up. That's what palliative care is all about. Managing the symptoms in order to give them the best quality of life for however long they can. Please keep us posted on how she is doing. God Bless.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  6. #6
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    Hi Irish, thanks for reply. My MIL stopped after 3 treatments in March. Just kept seeing changes this weekend, hope its just me? I agree a trip to the GP is in order but i need her agreement. Will be popping round again later so will mention it again. Thanks again x

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    My Mil uses ventolin inhaler, helps for a while. Have mentioned about visiting doc to discuss aches and pains but she has declined again. Such a worry, feel so helpless.
    When do you know when the lung needs draining? I know she won't have another scan so we just guessing how the disease is progressing. maybe its best not to know.

    So pleased i found this forum Thank you x

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    Wish I could answer your question regarding drainage but my Dad never had any fluid build up...hoping others will pop in with an answer. In the meantime, God Bless
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  9. #9
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    Hi Guineapig....In Answer to the fluid draining question I can only tell you your MIL would prob have to have an ex-ray..Cat scan..to determine the amount of fluid..location..and if indeed it is actually Fluid...I just went thro this with my Dad...After both ex-ray and cat scan it was decided not to put him thro a draining due to the cancer spreading..his health etc...It had it drained once and 6 days later it was back...He is however at pallative level now and the goal is just to keep him comfortable with high dose steroids( 40 mg) and puffers...And yes the effects of both are having a positive impact on both his breathing and energy..However I am under illusion this too shall pass...and the effects will wear off and reality will once again rear it's ugly head...for now I just enjoy the Loving Man he is..It is indeed a rough journey..
    Take Care
    Ronnie

  10. #10
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    Hi, thank you all for your replies. My daughter is called Ronnie weird !!

    My MIL only on 2mg steroids - 40mg - WOW!! I just want her to be comfortable, her best friend is visting next week. She is very excited. Just holding on to the good times.
    If sysmptoms continue - what do i do? Its such a hard situation to be in. x

  11. #11
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    Lets get down to the ultimate question!! My Mother in law diagnosed 7th dec 2011 with 6cm mass on right lung spread to lympth nodes and spot on adrenal galnd. 3 treatments of chemo that ended March 2012. Age 71 smoker for 50 + years
    can someone please tell me the prognosis! Time scale etc x

  12. #12
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    Am I just looking for it ;(

    My MIL seems to have changed. Does that sound weird? She seems different some how - i just can't put my finger on it. Or is it just me! This is such a hard time for us all and i feel so helpless. What can i do?
    Her breathing is getting worse (although she back on nicotene patches and the nurse at gp surgery registers "number 1" on breathing gadget. Really don't understand, what does this particular test test ? Nurse says "well done" to MIL, which obviously gives her a mental boost, but how can this be when she struggles for every breathe?
    She takes 2mg steroids (thank God for them) and she has "puffed" which she is so concerned about - always been worried about her weight, she asked gp if she could come off steroids because of the weight gain but gp explained that she would decline and feel very poorly with out them, Got pains in back and legs most of the time now, takes paracetomol, but i know they don't really help. Is this all "part of my complaint" she asks me. GULP! I just try to say the right thing.
    Her personality is changing too - she seem to have lost her sparkle. She quite snappy too which is not like her. I guess i should approach gp myself and ask lots of questions? What do you think?
    Thanks for letting me waffle on
    x

  13. #13
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    Hi Guineapig, in answer to your first question, time scales are very hard to predict. The averages that you might find on the internet are just that....averages and they are based on older statistics. The best predictor I have seen so far with stage 4 lung cancer is....if you notice a major decline monthly, they likely have months left. If you notice a major decline week over week, they likely have weeks left. This does not take into account the natural declines after treatment. I would ask the doctor if they could change or increase her pain meds if they are no longer effective. It's natural to see a change in personality, anyone would change and become a little snappy when they are not getting pain relief. Depression is normal when heading down this path, hard to sparkle when ones world is closing in. The best thing you can do to help her right now is to listen and ask her what you can do to make things easier. The more control she is able to maintain over her life...the easier it will be for her. I had a lot of talks with my Dad's doctor who was compassionately honest on what I could expect. We're here whenever you need us. God Bless.
    Irish
    Last edited by irish; 07-04-2012 at 07:04 PM.
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  14. #14
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    Thank you Irish, its so good that i have found this forum. Will be making an appointment with GP to discuss a few of my comcerns

    Thanks again x

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    Hi all, have had a few good days. It was my MIL's 72nd birthday yesterday and she had a lovely day with the family.
    Maybe seems a bit of a weird statement but she seems so well. her breathing is difficult at times but she chats for England and is in really good spirits laughing and joking.
    I keep thinking maybe all the tests are wrong!! Stupid...I know

    x

  16. #16
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    Not stupid Guineapig....just wishful thinking. We have all felt the rollercoaster that you have been on...good days, bad days. Enjoy the good ones while they last, they are precious. Really glad she enjoyed her birthday. Prayers for continued good days. God Bless.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  17. #17
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    Not stupid at all. I tell people I'm realatively healthy, cancer aside... But I am.

    So looking back through your posts, I would say if you want a prognosis ask her. She will know best how long she has. She seems to be able to make good decisions. Ask her if there is anything you can do for her. Don't be afraid; she knows what is happening and probably needs someone to carry out final wishes and stuff. What an honor. Don't you think? a
    May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
    December 2011 CT scan shows all clear.
    April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
    October didn't work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, Iím going for door #2 and will continue to live well and enjoy myself until I donít. Iíll keep you posted. Live it up everyone!

    7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldnít but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

    I've taken a couple of nasty falls this last week. (first of & mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

    There is another node swelling on the other side of my neck. Still small.

    April51's (Jody) daughter posted that her Mother's journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

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    Hi, my MiL takes Lameprazole for gastric probs that could be brought on by the steroids, but she seems to be having "indegestion" more and more now.
    Could the tumour be causing this pain? I reassure her by saying its the steroids but how long can i go on without knowing for sure?
    x

  19. #19
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    Hi Guineapig, Meds for sure can cause indigestion but unless you are able to get her in for more scans you won't know for sure if the tumor is causing these symptoms. Sometimes you can waste alot of time in going in for tests, scans, etc...quality of life is very important now. Unless it is something that a test can pinpoint a problem that can be resolved...sometimes it's just easier to treat the symptom at this stage. Is she at least seeing a doctor on a regular basis? If so you can check with them for the best way to deal with this. My Dad never had any problems with digestive problems while on steroids. God Bless.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  20. #20
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    Quote Originally Posted by irish View Post
    Hi Guineapig, Meds for sure can cause indigestion but unless you are able to get her in for more scans you won't know for sure if the tumor is causing these symptoms. Sometimes you can waste alot of time in going in for tests, scans, etc...quality of life is very important now. Unless it is something that a test can pinpoint a problem that can be resolved...sometimes it's just easier to treat the symptom at this stage. Is she at least seeing a doctor on a regular basis? If so you can check with them for the best way to deal with this. My Dad never had any problems with digestive problems while on steroids. God Bless.
    Irish
    Hi irish, my MIL doesn't see a doc on a regular basis. I wish she did then i wouldn't have to guess/lie about her symptoms. I have deceided that next time she asks me about a symtom i am going to advise her to see gp. Other wise as you say its only a guess. I just don't want her to be in any pain/discomfort. At least if we know the cause the doc can perscripe the right meds. Not sure that she would want further tests, not even sure she realises whats happening to her anymore. Its 8 months since diagnosis and she doing ok, but i can see a gradual decline.
    Its such a dificult situation as don't want to scare her but we do have to face these things at some point. The steroids are marvellous but we must get to a point where they won't mask symtoms? This is such an awful thing for any family to go through, my thoughts are with everyone x

 
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