[tony642Moderator]

I have never known MM to be a secondary cancer, and I have never heard of anyone getting a secondary cancer as a result of MM. This might be a question for ‘ask the nurse!’

Regards, Tony

[tony642Moderator]

Hi Myelomamum

I was diagnosed 5 years ago after suffering 2 vertebral wedge fractures, I had aSTC but I knew my hair was going to fall out due to the Melphalan, so rather than the cancer taking my hair away, I did it by shaving my head the day before I went into hospital. I felt a bit stronger after that as I was in control of what happened to my hair. Only a smal point, but a big issue for me!

I was in remission for 3 and a half years but the Myeloma came back just over a year ago. Since ten I have been on lenalidomide with very few side effects and it is keeping the mteloma under control with paraproteins very low.

Keep your chin up, with new drugs and treatments being developed, there is a good chance that many living with the disease will live a lot longer than in years past.

Regards, Tony

[tony642Moderator]

Hi there,

I had monthly infusions of Zometa, and it made me feel generally rubbish and listless. I was on dialysis at the time so I don;t kno if that had an effect. However, I have to say that after a few months, I did get used to it and eventually did not suffer from any side effects. but I think you have to weigh up the positives and negatives, so is it worth putting up with the side effects for the benefit it gives you?

Regards, Tony

[tony642Moderator]

Hi there,

I had monthly infusions of Zometa, and it made me feel generally rubbish and listless. I was on dialysis at the time so I don;t kno if that had an effect. However, I have to say that after a few months, I did get used to it and eventually did not suffer from any side effects. but I think you have to weigh up the positives and negatives, so is it worth putting up with the side effects for the benefit it gives you?

Regards, Tony

[tony642Moderator]

Hi Ald,

Mine is a very similar story although I was 60 when I suffered 2 vertiral wedge fractures due to myeloma. I also had kidney failure and needed dialysis, I have had a stem cell transplant which put me in partial remission, and that lasted 3 and a half years. I am now back on a maintenance dose of chemo, I can do most things that I used to do, except mainly running and I used to run in 10k races and a few minor things.

You have to work out the things that you are not able to do, and obviously not do them, but work out the things you can do, and even find new things that you have not done before.

I am one of the Myeloma UK peer buddies, and it sounds like you would benefit from speaking with one of us on the phone or on Zoom. You can refer yourself via the Myeloma UK website for up to 6 phone or Zoom sessions with someone who has gone through a similar experience to you. You can talk about having myeloma, stem cell transplants, chemo, and all the rest that goes with it. It might be worth it for you!

regards, Tony

[tony642Moderator]

Hi Silver,

I have never known anyone who has had a tandem transplant before, but obviously the medical team consider it the best option. The main thing is to be there for your Mum when she needs it. You say that your mother’s Kidneys were at 10%, is she on dialysis? I went through both Haemodialysis and then manual peritoneal dialysis followed by automatic peritoneal dialysis, so if she needs any help with that side of things please let me know.

I don’t know if a tandem transplant is a new form of treatment or not, but if it is, it is encouraging that they are continuing to research and have authorised new treatments.

I wish her well and please let us know how you get on.
Onwards and upwards!

Kind regards, Tony

[tony642Moderator]

Hi Ree,

Please remember that it is ok to not be ok, or feel ok. You have a disease which is not kind to you or your body. Almost everyone I have spoken to with MM has had their life changed to some degree, and probably that life will never be exactly the same as it was before. I think most people progress when they come to terms with that. That is a harsh statement to make, but I found once I accepted the ‘new normal for me’, I was able to move forward.

Full credit to you for wanting to continue working full time, and of course you should if you want to while ever you can, but just let those around you know about your diagnosis so that they can give you a bit of latitude of your performance is not as good as it once was.

Keep your chin up, and make sure you get some ‘you’ time. Onward and upward!

Regards, Tony

[tony642Moderator]

I am on a maintenance dose of Lenolidamide (10mg daily) but suffer very few side effects, so maybe a reduced dosage might work, worth giving it a try if there is no alternative.

[tony642Moderator]

Mine is a similar story to everyone else. I have 2 fractures in my spine. I found for me that it was a case of recognising that there were certain things I could do no longer (such as running, I loved 10k races) and accepting the fact, but there were other things I could do, so I do what I can do, such as swimming which I had not done for many years.

Hopefully you will find your own way around things and adjust your lifestyle to suit. Keep looking at the positive side and how you can live your life to the fullest you are able to whilst at the same time living with the disease.

[tony642Moderator]

You would have to discuss that with the medical team. Dexamethazone can have some unpleasant side effects, and quite possibly they would be worse for someone of your Dad’s age, so whilst wanting to give him treatment, it might be a balance of what is best for him without giving him additional problems.

Regards, Tony

[tony642Moderator]

Hi Dahlia,

I came out of remission last year, I was put on Dexamethazone, Carfilzimib and Lenolidamide for about 9 months, and I suffered with inflamed bronchial tubes as a result. After the cancer markers were found to be considerably reduced, I am now just on a maintenance dose of Lenolidamide. I am suffering very few side effects and am in a good place both physically and mentally at the moment, keep your chin up, you don’t know what might be around the corner!

[tony642Moderator]

Hi Cath,

A couple of months ago I went back on to Chemo after a 3 year remission. I found it tough at first, but as time went on, the impact reduced. I don’t know if I was building up a tolerance to it, or if my body was just getting used to it, but now it doesn’t bother me as much. The usual side effects are still there, they are just not as significant as before. Stick with it and hopefully, the severity will reduce, but as always, if you have any concerns, please discuss them with your medical team.

regards, Tony

Forum volunteer and peer buddy

[tony642Moderator]

Well done Fred, an inspiration to all those who are suffering and wondering what the future holds. Stories such as these give hope.

Regards, Tony

[tony642Moderator]

Hi there,

I took an an Alexa in with me as the hospital had free wifi, which kept me company during the day, and sometimes during the night when I could not sleep. I suffered a lot from Mucosytis, but as I had my own fridge, I had ice pops and ice cream which were great at soothing it.

If you do get Mucosytis, avoid anything acidic as it will probably be very painful in your mouth.

If you have free wifi, take a laptop or a tablet in with you so that you can while away the hours browsing, or connecting with family on Zoom etc.

Regards, Tony

[tony642Moderator]

Hi there,

Have you explained to your medical team the amount of pain he is in? They can refer him if necessary to a pain relief clinic, or prescribe stronger drugs such as Oramorph. However, if he also has kidney damage due to the Myeloma, some drugs can be harmful, but there are good alternatives available (such as Oxynorm instead of Oramorph), but make sure to tell those who are prescribing them if you have any other underlying medical conditions.

Regards, Tony

[Author]

Posts