Feeling overwhelmed

Hi, I’ve just started treatment 21 months after diagnosis. My protein/light chains were high but I was fairly asymptomatic (breathless/tired/joint pain). A repeat MRI, however, showed four lesions which were probably there at the last MRI 18 months ago.

I, like you, have found the whole process overwhelming, distressing and I have cried a river. I had planned a family holiday if the MRI had been clear. When I discussed this with the consultant he said fine, go on holiday, start the chemo when you come back, which I did.

It seems that often, not always, the progress is quite slow, you have time to plan and treat which is why, possibly, they are having multidisciplinary meetings and giving you an appt a couple of months away. Why not contact your MacMillan team at the unit and talk it through with them, they are really approachable and I’m sure they will either reassure you or get an earlier appt for you. 

Hi. Thank you for taking the time to respond to my post.  I did get in touch with my team nurse because an appointment had not come through and this is what they sent me. Another 5 weeks away. 

All my doctor says is that treatment is worse than the symptons. Is this true. Is treatment worth having. I am so confused. 

I had my third chemo today so only just getting into the swing of it, there are lots of posts with individual experiences and they do vary. I feel dizzy, have heartburn and have some skin reactions systemically and locally over the injection sites on my tummy which they took photos of and got some medics to look at.

I will say, thus far, it’s not as bad as I was anticipating. I’m dog walking, shopping, gardening as usual, although a bit slower and in a more befuddled way at times. I’m praying this is as bad as it gets, at least before the stem cell transplant which I know will be difficult. 

As regards to if the treatment is worth it, I’m sure everyone, medics and fellow myeloma sufferers, will give a resounding yes. If you look at the research and studies you’ll see blood cancer treatments have come on leaps and bounds in the past few years enabling people to live far longer than they did twenty years ago. There are new treatments, such as Car-t, used successfully in other countries that will also become available to us on the NHS in the next few years. 

I’ve had to try and push my concerns to the side and trust the process. Untreated Myeloma is described as a ‘sneaky’ disease with many only knowing when they break a bone or worse. You are already at an advantage because you are being monitored. Hope that helps.

Hi Tess123,    Kevin here  also known as Vespa,   sorry to read about your anxiety   but it is a natural feeling especially  when your partner   needs help also,   there are clear steps that  haematologist  go through and tend to involve   a Stem cell nurse specialist to  guide you,         please please take it from me, 17 months post Stem cell transplant,  the     treatment is worth it,   as GW2    said in their reply,   we are all different,  but most of the treatments if you  are  a candidate for Auto Stem cell  tend to follow the same pattern of  DVTD       which is a combination of    injections  ( in your abdomen )  and   some at home tablets,   none of this i assure you  is painful,    you may get some side effects,        fatigue being the main one,    possibly some neuropathy,   and   all these have their    treatments to counter them,     be prepared for lots of tablets and blood tests,     each cycle  tends to take  4 weeks,  a short gap (  1 week)  then onto the next cycle   until they get all the blood readings  low for  protein  and light chains,     IT WORKS !   Then   the stem cell harvest,   once again not painful but   boring and time consuming,   up to 7 hours per day   for 2 days to collect the plasma    and    put your blood back,  this is then frozen down  ( usually enough for 2 SCT)     ready for the  SCT,     that   was  my first hospital    stay,     a body conditioning  Chemotherapy,   then next day the Stem cell transplant,    let us all come back to that  for you   when and if this happens,    please tell us,  have you had  an MRI  SCAN  or a  bone marrow biopsy yet?        i am male,   67,   father,   grandfather,  an i assure you i am going to be around to see them all go to school,    often   overlooked by the   specialist is   the mental   challenges we face,     Macmillan   are brilliant for this type of support,  and   some people on this forum have been an inspiratuiion  to me on my Journey,  i am  well,   and in Remission and leading a good life,      it is  worth the effort,  but  you are going to need some support,    i  could drive myself to most of my appointments,     but i did  miss out on my Sons wedding in Australia,    as i could not travel,  but  i insisted my  wife other son  and daughter   went,        this was when i was right in the middle of the treatment cycles        i know its a long message,  but   a lot of us on here have been there,  and we can give moral support   on our  experiences,    you are not alone,    please keep in touch on the forum       we all wish you well      Kevin 

Hi,

Welcome to the forum.

You are thoroughly worthy of treatment - I wish that I could give you a hug, given everything that you are going through.

The tests and the multidisciplinary meeting are necessary first steps. They are needed to put together the plan for (typically) around 6 months of treatment. 

Just like building a house needs good foundations, your treatment needs to be well thought out, first, based on your specific clinical situation (type  of myeloma, standard or high risk, whether there are comorbidities etc)

Please let off steam to your heart's content! When I was first diagnosed, I had no one to turn to for support: my family were emotionally fragile because of my news, and I had/have no friends. This was before I discovered this forum.

The treatment is definitely worth having! There are very likely to be side effects, and I would be a liar to say that the treatment is likely to always be easy. However, plenty of people here like Vespa and I can confirm that there will be light at the end of the tunnel, when you can do what you want to do!

Speaking for myself, I have been in remission for 2 years and am really enjoying life!

Thank you. Every response helps because I feel someone is listening to me and has an idea of what I am going through. Still feeling weepy this morning but a little better. Need to put it back in it's box and be patient. 

Thank you for reading and responding. Feel this group is the only thing I can turn to at the moment. You all know and understand the turmoil. I will pull myself together and deal with it. At least I can vent on here and let it out

1. Thank you. At least someone has now told me what to expect. I can deal with what I know. It's the unknown that I struggle with. I hope your treatment goes well. X