Myeloma

Hi J19, 

I am really sorry to read about your diagnosis and my heart goes out to you as I remember how utterly awful and mind-spinning those first few weeks were. It is really hard to do, but my best advice is to try to take things a day at a time, a treatment at a time. It’s good that you’ve got some overview of what’s involved but sometimes you can get too much information which can sometimes be counter-productive. I am wishing you all the very best with treatment on Thursday, I hope it all goes really well and that any hiccups are quickly sorted out. Please continue to use this space as much as you need it, I certainly found it very helpful when I was going through treatment.

All the best

Greg

Thanks Greg, I'm over thinking everything at the moment..

Hi J19,

Over-thinking can definitely be a problem, I’ve been there and it is not pleasant at all. Distraction really helped me if you can do it? It is likely to be several months of treatment and things might move slowly or there might be bumps in the road and so having something you enjoy that can actively distract you from all the myeloma stuff can sometimes be really helpful.

Greg

Need advice.    Recently diagnosed mm.    Teacher in Arkansas.    Overwhelmed.      Numb.    

Hi Lindaann,

I am really sorry to read about your diagnosis, the first few weeks and months are really hard. The best thing I can say is the same I said to J19 which is to try to take things one day at a time, find out enough information but not too much and put trust in your medical team that they are going to put you onto the treatment that is best for you. There can be a few bumps in the first few weeks of treatment as your body adapts to what is being thrown at it, so always stay in close contact with your team if anything unusual happens, but hopefully you will find yourself getting into a routine soon enough and hopefully the treatment will start doing the job of putting those myeloma cells back in their place.

Wishing you all the very best and please use this space as much as you need over the coming time, I know I found it personally incredibly helpful.

Greg

Hi Lindaan,it looks like were both starting this journey  I get exactly what your saying,my moods,emotions are all over the place.so hard to be positive when faced with this...

• I imagine you have by now had a couple of treatments. Just take it one cycle at a time, and make notes of any side effects to report. You will probably get a shed load of written .info at the beginning which you will find quite overwhelming so just park it until you are feeling a bit braver. A lot of it does not make sense u to, if you have had a few months experience ..I am about to start my 6th cycle and am only now u dear standing the effects on my body. The end of the series (8) is in sight now. Have faith in your medical team, they know what is best. If you are in uk you will have some specialist nurses who know everything about the treatment and are a great help. Keep strong. 

Thank you all for your responses and kind words

Hello. I'm new on here and I was diagnosed on the 6th April 2022. I too feel numb,scared and lonely. My hematologist told me that my Myeloma at the moment is smouldering.  I'm having a biopsy and petscan to confirm it is smouldering. If not then I will start some treatment. If it is then it will be 3 monthly checkups. 

I feel lonely.  I have a wonderful husband and family but apparently my one daughter told me to stop telling family I have cancer because I don't because its "smouldering " and no family want to talk about it with me because at the moment im not having treatment. 

I have very bad fatigue and loss of appetite.  

Hello Flojo, I just wanted to reach out to you after reading your post. I'm so very sorry you are feeling alone and unable to share your fears with those closest to you. There are some lovely people on here who, I'm sure, will give you lots of support. It is my partner who is currently receiving treatment and I am his carer. Unlike you, he doesn't want to share his feelings. I shall watch closely to make sure other caring people respond to you. In the meantime, I will be holding you in my thoughts and sending you lots of hugs xxx