SIRTS Side Effects Please help
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Mizzey- For the SIRT, Mom had tiredness for longer and more extreme than the norm (about 8 weeks). Also, she had a history of adhesions from surgery 20 years ago, and between the failed resection and the SIRT, there are times when the pain is bad for days at a time. She tries to keep it from us, but it is debilitating at times.
You are not sounding desperate. You are sounding like a loving family member and I wish I was there to give you one of Marion’s hugs. I have two sisters and my heart is going out to you and your family.
Not sure if it’s possible where you are, or you have the time, but I (family) refused to leave Mom in the hospital alone. I slept in a chair for a couple of days. If it’s only for a couple of days till you can get her home, can a family member stay with her?
Most likely unrelated, but we had problem with Dad (not CC) while in the hospital and he was having reaction to too many narcotics which caused confusion and hallucinations. Some are more sensitive and Dad was one. In addition to confusion confusion, the meds even slowed his respiratory rates to dangerous levels
We are here for you. I wish it could be more, but we care.
Catherine
Update is that Kim has had a head scan and that is clear. So not sure if the excruciating pain in her head when she stands is as a result of the pleural effusion. She still is so very confused bless her. They are talking about the draining the fluid from her lungs next. Catherine did your mother have bad side effects from the SIRT treatment. I know deep down that this is probably the cancer advancing in other places than the liver as she did have spots on her lungs from her last scan on the 23rd Sep. I keep reading posts and searching and then scaring myself some are fairly positive but others are not . I know this is a waiting game but she is not ready to go yet. She keeps saying to me ‘Are they not telling me something’ ?? My other sister has taken over sitting with her and her daughter is going to see her tonight. What else can be causing the headaches, is it the low oxygen and fluid on lungs?? Questions questions, I have asked the doctors and this is why they did a head scan but that has come back clear. I’m sounding desperate so I do apologise to you all . Just want her to feel better again and I want my sister back ( I feel she is distancing herself and the confusion makes its so hard). x
Dearest Michelle, I am so very sorry to read the latest update. NO ONE should have to suffer like this. Is there nothing they can give her to help take some of the water out?
When I set up Home Hospice for Teddy I too ordered a hospital bed. They are easier on the patient as the side rails help them to get up. I also ordered a commode to keep by the bed when he thought he could not walk to the Loo. I had the bed in the living room where it was bright and airy and the big TV. When visitors came it was also good for them and more room for the nurses to work around. Also ordered a walker and oxygen. The oxygen helped him breathe easier and has a very calming effect. Your Sister needs to be made as comfortable as possible and I would ask the Doctor if there is something they can do about the water in the lungs. Hang in and hang on. Not sure how long your Hospice takes but the day after the ONC ordered it for Teddy everything came. Thinking of all of you!Dear Mizzie,
I’m sorry that I have no medical advice to offer, but wanted to let you know that I am so sorry to hear how your sister is doing and I wish for as much comfort as possible for all.
Take care,
CatherineHi There
I couldnt get Kim into hospital in the end due to lack of beds. She did get to her appointment on Friday although they could not say if the SIRT had worked or not due to being on 4 weeks post treatment. Kim has apparently got fluid on the lungs but we were discharged to go home. The following day Kim had a nasty fall going to the bathroom. She is extremely fatigued now and as a result can hardly walk. Needless to say she fell and screamed out (she has been staying with her mother last 3 weeks due to the decline and fatigue). Anyway after phonecalls to out of ours doctors and seeing the palliative nurse she was finally admitted to hospital at 2am. They confirmed that the fluid in her lungs is creating respiratory problems her oxygen levels were low and they were concerned about this. Also since the falls when she does get up with help to go to the toilet she is complaining of an extremely bad headache. we are not sure if this is due to her fall or the fact her oxygen levels are so low. plans are now in place for hospice to provide a hospital bed downstairs and nurse to come in daily. They have said that although this is not the end stage we should be preparing ourselves and making her as comfortable as possible. Please please can anywhere share what they know about fluid on the lungs and oxygen levels decreasing. She is extremely confused and has been so for the last 2 weeks but is much more so. I am going to make sure I get to hospital in time to talk to the doctors when the do their rounds but is this really bad!! Please tell me your thoughts and how it is. Could it be that she gets her chest drained and her oxygen levels will get better. What questions should I be asking the doctors? I am so scared that she is all alone in hospital and scared. Is there still hope?
Michelle. GOOD work and GOOD decision. Hopefully this will bring some clarity to a very difficult situation. Looking forward to their answers.
Mizzey….so glad you received a response and have a plan of action. Stay strong.
Tons of good wishes are heading your way,
Hugs,
MarionTHanks Marion, I took your advice as spoke to Prof Sharma’s secretary today. I received a call back from one of the doctors on the team Helen and she advised that it would be worth admitting Kim to hospital so our intention is get the palliative nurse to organise this tomorrow. At least we can find out what is going on and she can be assessed and hopefully given the right treatment to bring her back to us instead of sleeping all the time xx Feeling worried but and anxious for tomorrow but better that someone is going to something x
Mizzey…… Your questions are valid and should be answered by a health care professional. You would want to know whether the ascities (fluid buildup) is related to the SIR treatment or whether it is a side effect of liver function. The reason for the rising bilirubin should be explained to you as well. “Barely making any sense” may be related to ammonia levels in your sister’s blood. All in all, you deserve some answers and don’t let off on asking for such. Time for what we call our “boxing gloves.”
Hugs,
MarionYes, Michelle is the hardest thing ever to watch loved ones suffer. Then you have the times that the patient really looks good even with the CC. People were amazed at how great Teddy looked. Could not believe he was so sick. He was on mega Morphine for a couple of months and became very tired but with this monster we just can’t discount anything until we have proof of what is really happening. Wishing and waiting for the best news!
Thanks Lainy I have done that and the side effects dont appear to be as severe but it might be the morphine as you say. I really hope so and we are not dealing with end signs that you have kindly sent me in previous emails. We are all hoping friday will give good results just hard to see her the way she is at the moment
Hello Michelle. I am sorry to hear what your Sister is going through. It sounds like she may be having a reaction to the Morphine as far as the tiredness but not sure. I cannot help you on the SIRT side effects but if you go to our Search engine at the top of the page and type in SIRT effects, a ton of posts should appear on that subject. You never know how strong you are until “strong” is the only choice you have! Please let us know what happens and I am wishing for the best outcome.
Hi There
My sis had SIRT Treatment done on the 8th October and has really struggled with side effects of chronic fatigue. Is this normal. She was quite poorly on the run up to the SIRTs treatment but still went ahead with the hope it will shrink the tumours in the liver and buy her more time. She has since moved back in with my mother as she doesn’t feel able to be on her own. She is sleeping most of the day and night, getting up once a day for something to eat. She is on steroids as her blood test shoed that her bilirubin levels were high and I am taking her for bloods again tomorrow. I am extremely worried. She has a consultation on Friday as it will be a month after the treatment so we will be in a better position to see if the SIRTs has worked. However I fear that the symptoms are more than just reaction to the radiation. The last time she walked anywhere was last Monday to go for her blood tests but as mentioned she gets up for food once a day but then is back in bed. She is heavily dosed up on Morphine and steroids / The palliative nurse came round last week and thinks it is side effects but she is getting worse. Any advice would be so gratefully received right now as we are really worried about her. I am not sure how I am going to get her to the hospital on Friday as she has to have 2 scans before seeing the consultant. She is really swollen as well which may be due to the fact that she has not been moving about. She has swelling (ascites) but says it doesnt hurt. She is barely making any sense at the moment . I just don’t know what to think at the moment?
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