This topic contains 19 replies, has 9 voices, and was last updated by 
annette 11 years, 4 months ago.
My dad was diagnosed with MM 18 months ago, his paraprotein levels were apparently the highest his haematology team had seen, and he was in kidney failure when he was diagnosed, however he responded really well to the first line treatment of thalidomide and steroids and a chemo drug. When this treatment stopped, unfortunately after a month, his paraprotein levels had shot up again, and so he was started on Velcade.
About 2 months ago he developed severe pain in the right hand side of his face, and a large swelling appeared. It turned out to be a spread of the myeloma and a CT scan showed that he had several MM masses around his spine and kidneys. However all this time, his blood levels remained ok, and the doctors said they didn't match with what they were seeing which was an aggressive MM which had spread WHILST being on chemo.
He was then started on Revlimid, however had a very nasty allergic reaction to his and so it has been stopped.
He is now just on steroids which he has just 2 days each week, and is no longer going to be actively treated. We have been told he had " weeks left" for the past 6 weeks, and yet today he had review bloods and a OPA at which we were told his bloods were still stable.
He is very weak, and his mobility poor at times.
Really, and I know its impossible to be specific as MM reacts in everyone differently, but I feel I need to know how much time he has left with us? I wondered if anyone can give me any idea on what the weeks ahead hold in store now he is no longer receiving chemo? In himself he is quite bright at the moment, and we are filling our time, making precious memories, however our GP has told us this is the "calm before the storm"?? How long is this "calm" likely to last?
We are now at the end of the "treatment road" and it feels like a "waiting game" now. The emotional rollercoaster is awful 🙁
Hello Annette, i am so sorry to hear the news about your Dad, and the next few weeks must feel very daunting for you all, you are right to enjoy every moment with him and have those precious memories. How about talking to lovely nurse Ellen [our myeloma nurse] she may be able to help with your questions now that your Dad has reached the time when chemo no longer works for him, much love to you at this difficult time, and do take time to care for yourself, as you say it certainly is a rollarcoaster for us all, best wishes San xxx
Hi Annette
I am sorry to hear about your dad,I think you know the answer yourself,no one can tell you how much time he has left,there are a few on here who have been in the same position and they could give advice on how to cope with your situation ,but your dad will choose his own time,no doctor or anyone can give you a time .
I would suggest,it might be practical to get in touch with Macmillan ,who can arrange for your dad to have some care in the hospic ,there not places just for people to die in,they do a lot of therapeutic work as well,plus respite,it is worth exploring ,as its helpful to the patient as well as family.
I hope you have lots of answers to your question ,from people who have trodden this path before you,but as there loved ones die they look at the forum less.
I wish your family well on the last stage of your journey.Eve
Hi Annette
I am so sorry your Dad has progressed so swiftly and for you seeing it and feeling the pain alongside him. As Eve has said, there is no sure answer to " how long?" I have walked this journey with many individuals in my role as priest, and I know just how an uncertain walk it is. I agree with Eve that you could do with getting help lined up for when you do need it, either at home, or in the Hospice if your Dad can avoid being admitted to Hospital. Is he in a great deal of pain? If so are the Palliative Care team helping?
Do make sure you get help when you need it. I remember from someone else on the Site that they as career had to make the running to get the help when they were in your position.
Making memories is important as is "saying goodbye" to friends and family to many people. Is there anything special your Dad would like to do before the end that you could make possible? One of my neighbours was able to take her husband to their favourite local beauty spot the day before he died. That has always meant a lot to her.
Love and prayers.
Mavis x
Hi Annette,
I am very sorry to hear about your dad, there really is no one except the great man upstairs, who knows how long it would be. It's strange as people are fighters and there no rhyme nor reason why someone is with us so long. I can only imagine how difficult it is for you all
Our thoughts and prayers are with you….Mavis is right, the palliative care team and hospice do a wonderful thing 🙂 use this skill and care
Vicki and Colin x
Hi Annette, I can identify with what you are asking, but please may I offer you some words of support…
If your Dad is 'calm' too and happy, why worry about what lies ahead ? For now, you can sit and talk through things that may bring a smile to both of you… His childhood, hobbies, what he wished he would have done in the garden, anything that you know would give you those lovely memories…..
It is the hardest time worrying, as I did when my Mum was told her Myeloma was back with the added kick of her getting a very very rare complication of plasma cell leukaemia, they said it would be rapid and aggressive and boy did it knock us all off our feet… They said a few days if that… This was after she had been given the all clear…. After her SCT… After she had started to rebuild… I spent ten days asking the same question as you are.
Having said that, I know you will still worry, but I am getting great comfort from knowing what Mum wanted me to do, when she wasn't here, and I am almost living each day now doing things that I know Mum would have wanted me to do, it gives me comfort..
Time with a loved one is so precious relax, and keep talking….
Lots of love and prayers with you xxx Angie x
Hi Annette I am so sorry to hear about your, my husbamd passed away nearly 4months ago, his consultant told him he had 3 months to live. Believe me you do not want to know how long he has left,that is all we focused on and Michael lived his last 3 months terrified knowing he was going to die. if your dad is calm and happy leave him be as Angie says why worry what lies ahead you cannot change it. Enjoy the time with him,you will remember these moments, not like me I remember Michael a frightened man.Im not sure I know what your GP means about the calm before the storm.
Live for the moment
much love
Suex
Hi all, thank you so much for your lovely kind words. Sorry its taken so long to reply. I am starting to understand about what you mean about the benefits of not looking ahead, not being obsessed with "how long" but just enjoying each day as it comes. We have Dad's birthday in a couple of weeks and are planning a lovely BBQ, just immediate family. Then once that's been and gone, we'll plan something else to look forward to. I am spending as much time with him as I am able. I have 2 young children, the youngest being 3 and so full of energy that she tires dad out, and although he loves seeing her, I do try and limit the time of our visits to short ones as she can be very loud! 🙂
He is starting to feel unwell again after a few weeks of feeling great. However he re started the pamidronate drip last wed, and it always used to make him feel rough so we are wondering if that's the reason. The swelling and uncomfortableness in his face has been slowly returning these last few days. But I am trying to make a conscious effort not to focus on it, and trying to help dad do the same. Very hard though 🙁
Sue, I think our GP meant that although he seems well at the moment, we know we have rough times ahead, at the end, and that with cancer patients she said they often have a very good time health wise shortly before the end? Their bodies almost have one very last attempt at fighting the cancer before it no longer.
Much love Annette xxx
Hi again,
This is such an unbelievably difficult time. Today is dads birthday, I have tried so hard to live each day as it comes but am just having a really bad day 🙁 He is visibly deteriorating, getting weaker, having much more pain, he is on 40mg MST twice a day (is that a lot??) plus oramorph a couple of times a day. His eye is bright red from a bleeding vessel that hasm't improved for a week or so now, he has fluid on his lungs so has had his water tablets increased, and his mobility is getting worse, he has real weakness in his right leg. So I start "preparing" myself … BUT his blood test taken yesterday apparently is "fine" according to the oncall GP I spoke to today (His own GP wasn't in today). Why is he deteriorating, yet his bloods all seem fine? Sorry to have a bit of a meltdown on here … didn't really know where else to turn! Emotionally I am at breaking point and exhausted 🙁
xxxxxxxxxxx
Hi Annet
His bloods might be fine,but they are not telling you about the fluid on the lungs,it could be a number of things,have you got a contact number for the hospital,if you have ring them,every cancer patient should have one,they will give you advice or tell you to bring him to A&E,either by car or ambulance.
you do not say were the pain is,or what arrangements are being made for your Dad nearer the time,have you any contact with district nurse!!!!! if you hve ring them,at this stage you should ,have a palliative care plan in place,and your dad should not be in extreme pain.There is always something stronger to take,40m isn,t much in late stages.
It is exhausting and emotional ,I can only say,when i was going through a bad time with hubby,I cat napped when ever I could 15 min works,only way to cope,if dad sleeps you sleep.Eve
Hi Annette, I am so very sorry to read of your Dad's troubles and the rough time you are having. Reading your posts you seem to be getting very little help from anyone. I hope this is not the case.
You should, as has been said, have a Cancer Nurse or hospital contact number you can ring for help and advice. Has your Dad got any medical documentation, like a booklet there might be telephone numbers in there. In my experience the local GPs are no good they know less than you about Myeloma. Seek help from the hospital if you can.
all the best of luck
Kindest regards – vasbyte
David
Eve, no one has given us a reason for the fluid on his lungs, just that its there, but he has an appt with his consultant tomorrow so we may know more then. He had a chest infection at the weekend and slept the entire time looking awful and not eating. We prepared ourselves to say goodbye but he has rallied round and has fought the infection. A question I have is that he is finding more and more hard tiny lumps under his skin?? Just this last week. Plus has very itchy skin.
Susannah, I have just read your thread "waiting" I am so sorry you were told in such a harsh way 🙁 and thank you for taking the time to give me your kind words.
Thank you all xxxxx
Sorry my post seems to have attached itself to Susannahs post rather be a reply to you all 🙂 xx
Hi Annette
I just caught up with your post on your Dad's birthday. It was obviously going to be a difficult day. You must've beat yourself up that sometimes you feel overwhelmed. Most folk would in your situation.
Sorry haven't got any light to shed on why things are like they are medically, but wanted to say that your Dad's painkiller dose wasn't way above what many household have.
I think I have learnt that bloods aren't all the answer to what is going on with the MM.
I agree with David that you need more help. Have they put you in touch with the Palliative Care Team yet? You do need them or a McMillan Nurse. I'd advise you to follow it up on your Dad's behalf.
Much love at this difficult time.
Mavis xxx
Thanks Mavis, we have got Macmillan support but they've not really been able to answer many of our questions, I guess because a lot of the questions as you've all said don't have answers 🙁 They have offered us a tour of the hospice, and family counselling which my sister and I have accepted and are waiting for.
To be honest our best support has been our family GP who has been wonderful and in my opinion has been a God send! She is very new to our practice, replacing our old GP (Who dad had been to several times with symptoms of anaemia prior to diagnosis and been fobbed off!!)His Paraprotein was in the 70s when he was diagnosed which I think is quite high? Anyway, our new GP has come from the local Hospice and so has a high level of understanding and experience of cancer care and has been wonderful in explaining things to us, dad, managing his pain. The problem is she has been the only one who has been supportive and informative and I can't keep phoning her with questions, so its only when we need an appt for dad for something that we get the chance to ask other questions.
He had an OPA with his consultant today, his Paraprotein is still 6, so the steroids appear to be holding that at bay, yet he clearly is getting more sleepy, uncomfortable, and the consultant said the small lumps under his body were related to the myeloma.
He didn't seem concerned about the fluid on his lungs? Unfortunately I wasn't at the appt and so couldn't ask what was causing that. They have arranged to see him again in 6 weeks. I think they are continuing to see him so he doesn't feel "abandoned" by them.
xxxx
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