This topic contains 29 replies, has 13 voices, and was last updated by 
meganjane 11 years, 5 months ago.
Hi Everyone,
I have been reading this forum quite a lot but I have only just got round to making a post after recent goings on. My dad, who is now 52 was diagnosed with MM around 6 years ago. He originally had a SCT and was on thalidomide right up to the monday in the week before christmas when he went into hospital with severe back pains which caused him to much pain to even move. He was taken of thalidomide and there was a chance that his spine had collapsed. Luckily enough, it hadn't but at clinic yesterday we were given the news that the MM had returned to quite an extent and he has a lump relatively near to his heart and one at the back bottom of the skull where the 'peg' is, sitting next to the spinal cord. It has also returned in his hips and rib areas. He is starting on the Velcade treatment next tuesday which will be done for 6 months. They also said that they will also need to do a SCT once the treatment is completed. I am 17 and currently living at home alone with dad following my parents separating and my two older sisters living away from home. Can anybody share any ideas/thoughts on this situation? How long am I looking? I just want a true perspective on the situation rather than one that may be hidden.
Thank you,
Daniel
Hi Daniel and Dad
Am sorry your Dad is having trouble with his back 🙁 How long are you looking?? well truth is no one can say apart from the Dr who will have a good Idea, But my thinking is that it could be a long time as they are getting your dad ready for a SCT 😀
Stay strong Daniel am sure your Dad will be well looked after during his treatment.
Tom "Onwards and Upwards"
Hi Daniel
the fact that your dad had a really good remission of around 6 years after his first SCT suggests he'll get a good response from his second. I'd hesitate to give you any further advice on this but the fact that he's on for a second SCT is also good as they feel his constitution can take it.
Hi Daniel
Apart from your dads consultant , you will get very good advice from the Myeloma UK ladies in Edinburgh
You really need to give them a call ASAP, it's there help & advice you really need
I agree with other posts 6 years MM free is a good result
Not sure what you mean by lumps ?
At 17 you need a bit of family backup from your two older sisters ,or any other relatives , you should not be alone in this
All the best
Peter
Dear Daniel,
First of all, it's good that you were able to write in. I'm sure it wasn't easy. I can tell that you really want to face up to whatever is happening.
I've had myeloma for almost five years, so I'm not writing as a doctor, but as a patient. Your father did very well to have responded to the transplant and to the Thalidomide for so many years. I don't think that anyone can tell you what his 'outlook' is because myeloma morphs in ways that are very difficult to measure or even describe. It's to do with changes that happen to a patient's genes and to their bone marrow and how responsive the person is to each treatment. In a way, the body is a complex ecosystem which evolves in time, and each patient is a bit like a new undiscovered planet – there is so much we don't know.
There are some generalisations that are made in 'studies' that doctors write after they've done trials with lots of patients. These results don't tell us what will happen to each individual patient. They help doctors to figure out whether a particular drug works for lots of people, for example. Studies suggest that if someone has done well with their first transplant, they are 'likely' to benefit from another one. Studies also show that Velcade is a very good drug, and works for many patients who have relapsed. It sounds as if your father has some growths from the myeloma. If so, they may need to be treated with radiation or even an op, or maybe, the Velcade alone will do the trick. Your father's doctors are responding to the situation fast and that's good.
I guess you've been used to your dad taking his Thalidomide and that the first transplant must seem a long time ago. It looks as if your dad has had a 'relapse'- which is how they describe the illness coming back and affecting his health. Even though we can't predict how your dad will do, I think it's important that you know that some patients can 'relapse' a number of times and get better a number of times. No-one will be able to tell you for how long the patient will be better each time: unfortunately, we have to wait and see. I've relapsed after a transplant and responded to treatment again: I can cook, travel, learn new skills; today I phoned my son Daniel who's studying in Shanghai and he knows I'm alright.
As for specific treatment options – I haven't had Velcade. It's often given together with a steroid such as dexamethasone. Like many of these meds, it may cause tiredness, digestive issues, tingling in the hands and feet. When a patient goes back on treatment that's heavier than before they might feel really weak for a while. Steroids can make a patient hyper for a few days and then they might have a drop in their energy. After the transplant your dad may be extra tired for a while, but remember that he's had one before and was able to recover.
I think that it would be a great idea to have contact with a Macmillan nurse, and perhaps have them come to your place for a visit and discuss the situation. Your dad might be eligible for both practical and financial help, and it's essential to lay the situation on the line, to say what's really happening. This is also a time to work out who might be able to offer some support to you or your father – friends, relatives, whatever. Sometimes it's odd, but people you don't know that well might help as much or even more than those you've known for ages.
I was about seventeen when my mother was diagnosed with cancer( not myeloma). It was a shock. I helped to look after her and sometimes it was tough, but I am very happy about the time I had with her. Seventeen is an age when so many things are happening at once : exams, new friends, future studies on the horizon. It's important that you do go get some time to yourself and that you can think about who you want to be and that you can still hang out with your friends. When a parent has a relapse or is diagnosed, it's like an extended emergency : adrenaline surges and maybe a sense of dread. Your dad is likely to be worrying about you too. It wouldn't hurt if you chatted to your own doctor about the situation, and if you're feeling bad, finding out whether there's someone you could talk to. I believe that people who can ask for help are more likely to get it.
I'm sure as you get older you'll have learned a lot from this experience – you may even be able to help others with your special knowledge. In the meantime, I hope your dad responds to the treatment and that you can think of your own needs as well as helping him. And of course, you can write to this forum and tells us what's happening. You don't need a question to write in.
Very best,
Eva
Hi Daniel
You have come to a good place for information,and you and your dad can be assued people will give you all the help and support they can.
Please get it out of you mind how long,!!! It sounds bad but there is so much treatment these days,as you know it is treatable but alas no cure,it buys time,your dad had a good response first time,no reason why after treatment,he could buy a lot of time.
What you are describing are scells that have joined up to create a plasmatoma or small lump,they treat this with the chemo,but if it is painful or in danger of causing mor damage radiotherapy is used.many people on here have had the same thing plus lots of damage to the bones and go on to remission.
Velcade is having good results and is working for lots of people,but as Eva said,people and thes drugs,have different out comes,if the experts new why,they would be able to find a cure.
Good advice to ask Ellen the nurse,for info,she can send you lots of information,the more you learn and understand the less freighted you will feel,it is a big learning curve and the people on this site,will help in any way they can.
I can only tell you 2years ago my husband started his journey,plasmatoma ,cracked vertebrae s,lesions,lots of bone damage.and a few blips along the way,chemo first line CTD then Velcade,then SCT ,2 years on he has remission,and we have just got back from New Zealand.
He is not ready to push the daisies up,he has a lot he wants to do, I wish you're Dad a good journey.Eve
Hi Daniel,
Like you when my partner Colin was diagnosed in October 2011 I thought the world had come to an end, still do sometimes. And reading lots on the Internet can be depressing and misleading. I was worried about how long and what ifs. Try not to and always have someone you can talk to about your dad and you and your worries.
It is hard to deal with and you are very young so it is important that you and your sisters help your dad together! Hey also remember that that treatments available now, and on going are going great guns! It does not mean the end, alright it's a tough chapter but you and your dad can do it!
Ask any questions you like help any way we can!
Vicki and Colin x
Hi Daniel
So sorry your Dad has relapsed. I can understand how worrying this is for you and difficult for you to cope with. I can see why you are asking "how long", but as otheres has said, it is just not possible to say. From what I have seen, not even Consultants can be certain until the very last weeks. Things are so much better and there are so many treatment options. However, as you may remember from your Dad's first SCT, he has a hard time ahead. I'm sure you will be able to support one another through this. I do hope you are able to talk openly to one another.
Like others have said, do seek out one or two folk to support you.
Lots of love.
Mavis
Hey guys, just thought I would take 5 minutes away from everything to give you an update. Dad started his Velcade on the 15th January and has so far had no side effects directly linked to it. The only thing that has cropped up is that we had to call another ambulance on friday morning as he couldn't move or get out of bed to take his education at all. With a suspected collapse of the spine(which was just 2 fractures to the lower spine), the hospital were worried. After getting a lot of morphine and medication down him he was able to move one of his left legs okay but there was trouble with his right leg. After having an MRI scan yesterday, the results have come back an it seems as if paralysis has hit on the lower right leg and he can no longer move it, but can move his toes. The next step is that he is going to have radiotherapy on it which is supposedly not advised while on Velcade right? I was just wondering what the risks are from this? and what would happen then? Im not used to seeing him like this at all as he usually walks about 7 miles a day on the railway for work!
Hope your all okay,
Daniel, Torquay. (PS. Keep an eye out for me on skysports 1 tonight, local derby time if your into your football!)
Hi Daniel,
I am so sorry to hear that your Dad is in hospital and having problems with his spine and legs. I don't know the answer to your question about radiotherapy and velcade but I assume the doctors would stop the velcade for a short time while your Dad had the radiotherapy if necessary. My husband Phil had one of his cycles of velcade and chemo cut short last June when he needed operations on both his legs. Once the legs were healed the doctors started up the chemo and velcade treatment again.
I hope your Dad is feeling better soon and that the radiotherapy helps his spine.
Megan
They decided not to go ahead with the radio theory and he has been on a steroid drip a few times a day since tuesday which finished tonight. They are going to leave it as it is and try to control the pain before sending him to another local hospital who have a special radiotherapy center and he will rehabilitate there for. He is also going to be given a wheelchair and it looks like he will be selling his car as he seems to think he wont be driving again for at least a while. Had one of my sisters over from Dubai to visit Dad this week and she is around for another 3 weeks, the other is coming across next weekend. The long road gets longer.
Hi Dan,
When I relapsed from my SCT I was also given Velcade. Although they don't say as much Velcade is a primer for a 2nd SCT… Unfortunately I and several others here didn't create enough Stem Cells to provide the opportunity for a 2nd SCT so the Velcade was given as a stand-alone treatment.
My relapse also showed a secondary tumour on the sternum, a difficult area to treat with radiotherapy due to major organs, in this case specifically the heart but my consultant said that if it was MM related (which she though it most likely was) then the Velcade should be able to quell it along with the rest of the disease. 😐
It did… the golf ball sized tumour disappeared with 4 weeks. I achieved total remission after 6 Cycles but unfortunately it didn't last long… but it only goes to show my premise of it being mainly a primer. 🙂
I hope they quickly get on top of your Dad's back/leg paralysis problem to allow the Velcade full and uninterrupted reign to work its magic. 😎
All the best to you, your sisters and especially your Dad.
(Tell your sisters to enjoy their time with your Dad and then go home with a sense of relief. I am sure that your Dad will be out to visit them by the end of the summer). 😉
Regards
Dai.
Hello dan,
What a time you are a all having, I do hope they get your dads back & legs sorted soon, I bet he's looking forward to seeing your sisters you too for that matter, anyway dan let me introduce myself my names liz and care for hubby kev he was diagnosed with MM aug: 2010 also with fractured sternum and ribs after treatment CDT went on to have a SCT April 2011 which resulted in complete remission sept:2011 but sadly relapsed April 2012 he was put on velcade/ dex but they discovered 3 vertabrae collapsed and a tumor on the top of his spine they too wouldn't do anything till they finished the velcade.
He had all eight treatments albeit the last two were reduced because of PN in his feet (very painful) after two MRIs we are still waiting to hear what they are going to do? The velcade didn't do the job in the end and is now on revlimid / dex, kev did have some radiotherapy two weeks ago to zap his ribs and fingers crossed its worked! Kevs had a few infections that have put him in hospital the last one being pnueamonia just three weeks ago but he's doing well now and feeling the best he's done for a while, so hopefully next clinic we'll have a decision on his back.
Keep well dan and give your dad our best
Love liz & kev xx
Wow, I never knew I would be able to talk so freely on here, thank you all so much for giving your experiences and it has helped my understanding so so much! I had some good news today, dad called and said that his first couple of weeks worth of velcade has lowered the PP levels and the myloma hotspots are shrinking. As well as this, he now has a wheelchair and he seems to be enjoying it! I'm about to go over the hospital now as school is just coming to the end, I hope he is in good spirits and I will keep you updated when I find more out! Thank you all so much!
Daniel x
Daniel
You are a star! Also so glad to hear that your dad is making some improvement. The medical teams are great at what they do so you both have faith in them, along with the drugs and things will improve :-). Keep talking on here dan it really helped me when I was so worried about Colin and everyone's supportive and helpful.
Keep going 🙂
Vicki and colin
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