This topic contains 10 replies, has 9 voices, and was last updated by 
Pickle2024 11 years, 9 months ago.
Hello everyone, My dad was diagnosed with Multiple Myeloma 1 week and 2 days ago. It was discovered due to kidney disfunction and other symptoms such as shortness of breath and painful legs and weightloss. It has been a great shock but we have been looked after fantastically by the Doctors. I had never heard of this awful disease and have been so relieved to find such an amazing website, with lovely people who clearly care about each other and offer such wonderful support and advice.
My mum, sister and I are meeting with the Doctor treating dad today for a full update. Dad started VCD(think thats the one!) last Friday and seems to feel ok, he has had a lumbar puncture too, which we will hopefully get the results of today. Dad is also waiting to have a skeletal scan today.
I hope you can help me with the following question….Do people suffering with MM always have bone lesions? Also, about 6 months ago dad fell off a ladder, which hit him on the head, we discovered a couple of days ago that the lump has increased in size?! Is this connected too? Does MM ever present itself like this?
Sorry for all the ramblings, I just have so much whizzing around my head. Thank you for taking the time to read my post.
Jen 🙂
Hi Jen
Im sorry your Dad has been diagnosed. I cannot answer your questions im afraid, but im sure someone will pop in who can.
My Mum was diagnosed in November last year aged 57. We had never heard of Myeloma. It has been a huge shock to us all as a family so I understand what you are going through. Please try not to look at other websites, they scared me witless, you will find lots of info and support on here.
I hope today went ok at the hospital, I find it useful to take notes at the appointments so I take my jotter!
Best of luck with everything
Kind regards Alison xx
Hello Jen.
Welcome to the forum. Sorry that you have had to join but hopefully you will find plenty of support and advice. Multiple Myeloma is an awful disease that presents in many ways. Everyone's journey with MM is different and so is their treatment.
I was diagnosed in October last year and as yet have only had one lesion as far a I know. Bone damage is common in MM and is usually the first sign of the disease. I myself suffered back pain and have suffered spine damage.
Once your dad has his skeletal survey you will have a clearer picture. As to his bump I don't know – sorry.
You and your family are in for a roller coaster of a ride during your dads battle with MM but you can be sure of helpful support and advice from the members(friends) on here. Ask anything, scream come on for a good moan and let of steam you will always get a response.
Best wishes to you and your family and especially your Dad
Andy xx
Hi Jen
Sorry you have to join us but welcome. Like Alison I can't answer your questions but someone here will help you. My husband was diagnosed 6 years ago but only started on CDT last week. He has two lesions on his ribs. We saw radiotherapy consultant yesterday and she said that she didn't think that radiotherapy was necessary. Maybe sometime down the line but she hoped that she would never seem him again!!
You will get a lot of support on here and there are quite a few who are very knowledgeable about this bl**dy awful disease so ask whatever you want. It is also a great place to rant and rave.
My best wishes to your dad
Take care Jean
Hi Jen,
Bone lesions are very common amongst MM'ers… some more than others. By the time I was diagnosed with MM I had already had a vertebrae blasted away by radiotherapy due to it crumbling and pressing against my spinal cord. At diagnosis I had two tumours on my head but my frontline treatment CDT, soon go rid of them and now I have two small craters.
Welcome to the board… I wish you were not here but as circumstances have forced you this way I hope that we can be of help with advice based on experience and friendship for free.
Where are you and where is your Dad being treated?
Regards to you and your family:-)
Dai.
Hi Jen
Sorry you have joined us but you have come to the best place.
First thing tomorrow ring Ellen she will be able to give you a quick run down and send you booklets.
Stop looking for a cause and and start learning as much as you can about the treatment,you are now on a journey and it is a big learning curve.
Myeloma is Staged and there are different types some aggressive some not.
It does depend on how you consultant,how much info you receive,if you do not ask they might not tell you.
You need to know what type of Myeloma he has.
ask about tumour or lesions plus bone damage
spine compression
when you have a full picture you will work out what stage it is
If they tell you they no longer stage Myeloma,then ask why .
you have a right to see all test results ask for them even if you do not understand them,you will soon learn
It does depend on which hospital you go to how the service and care is.Some of the big teaching hospitals and there are dedicated Myeloma specialist .
Your Dad must have been ill before this,what did his doctor do!!!
I know all this seems very frightening but the symptoms concerning the kidneys will soon be controlled you will see a difference over night,it is usually,patients who have kidney problems caused by a build up of calcium in the kidneys causing sickness weight loss, please make a list of questions,ask for a booklet on Myeloma,and last but not least,if you do not ask,they might not tell you.Eve
Hi Jen
Welcome to the forum but also sorry you had to join:-( well I cant add anything to what has already been said apart from take one day at a time and go with the flow watch out for raised temp and infection's (gosh av said a lot) and get your Dad to rest when he feels tired.
Good Luck to you and your Dad in the MM Journey.
Tom "Onwards and Upwards" xx
Hello Jen,
Again sorry your family has been touched by this condition. My partner colin was diagnosed in October 2011 and has had 7 cycles of treatment. When he was diagnosed I read every website I could find and they all scared me to death. They were very depressing. I counsel myself to read this one only and correspond with friends on this site. It helps. I too am always tryi g to look for a reason why and even more so tha website that tells me that there is a cure. Sadly at this stage I have found neither the reason nor the cure. That said try to be positive. Get the most out of the information leaflets and the details from the consultant. Colin has one bone lesion by the way. I get the impression that this is common to have one or more lesions (listed as one of the main symptoms).
Eve is right, try to find out as much as possible, from those that know. Write down questions you need to know answers to, because if you're anything like me will forget them when you get to the appointment.
Good luck Vicki 🙂
Good evening,
Thank you all so much for your lovely supportive replies. Dad is now home from hospital and is on day 9 of his first cycle of chemo. He is on the VCD chemo. He is feeling tired but not too bad at the moment. We met with dad's consultant and a specialist nurse who he will see at the day unit, he was very nice and went through things with us. They said that dad's bump was nothing to worry about, just a cyst (phew!!). The consultant gave us tons of information and no doubt I will have to ask him some of the things again. Eve, I did ask about staging but you are exactly right, they said they don't stage, he just said that he had high bone marrow content, 80%, I'm no doctor but that sounds like alot. He has lightchains too and they are waiting for a final result from Birmingham, but he is expecting that to be extremely high. They will monitor his kidneys closely as they were extremely bad when he was admitted. His skeletal xray didn't show any lesions, which I am beyond grateful for, but he has thinning of the bones around the thorax rib area, dad will be taking the drug to strengthen his bones but he can't start that at the moment as he required some dental treatment, which he has to have first.
We weren't aware that the hospital told dad back in 2008 that he had suspected MGUS. Dad has a pacemaker and before it was fitted he was back and forward with heart problems, I think he didn't really take in the severity of the situation at the time and for some unknown reason, no one has mentioned it since. I know we will need to find out what happened with that but at the moment it is all too much to comprehend so we are just dealing with one thing at a time. We have some issues with dad's memory so we have decided that dad will always be accompanied for medical appointments.
They have said that dad is ok to drive, how does/has everyone coped with that during chemo?
I think about this dreadful disease all the time and what the future holds, I have decided jnot to think further than the week I am in, although that is hard. I hope everyone else is ok, I am so grateful to hear views and advice no matter how hard it is to hear.
Thanks again, Jen x
Hi Jen
You could be talking about my husband,except he had tumour on back,plus lesions on skull and shoulders after first CTD his bone marrow went up to 80%,so started Velcade which took it down to 6%,it was still going down,then he had his SCT and has come home,but is having a few blips on the way.
Slim has a chemo brain,I drive most of the time but when he was well he drove,think you have to be careful because of insurance,I drive:-P
you have to stop and think about the drugs he is taking,not just chemo,Slims on a high dose pain relieve.Hope this helps Eve
Hi Jen,
My dad was diagnosed with mm about 4 months ago and is just about to start his 4th month of chemo. He also had light chains and lyric lesions in his spine, hips and ribs. The chemo makes him really weak and tired and he's also taking thalidomide and steroids which seem to cause symptoms worse than the chemo. He gets really depressed, angry and very snappy when he takes the steroids and has to sleep quite a bit. He's also started treatment to strengthen his bones which also makes his bones hurt so he increases his pain killers for a few days around the treatment. In the first 3 months of treatment, his light chains have decreased significantly, the pain in his bones has improved and he can now walk a bit without his walking frame. They said he will need a min of 6 months treatment and going by the past 3 months, it's not an easy journey but it's doing it's job.
I know how you feel as its such a shock but I felt better after doing lots of research and finding out as much as I could about the disease, at least you know what your dealing with. My dad was very upset after his diagnosis but 3 months on, he has become more positive as the treatment is showing signs of improvement in
His general health. I hope things are going well for you and your dad too…..chin up and keep positive, it definitely helps.
X
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