Anemia + Back Pain = I am so SCARED!

Hi Algorithm and a warm welcome to this corner of the Community although I am sorry to see you joining us and to read about your ongoing tests. The unknown is challenging but tests like these are used rule in our rule out various conditions so let's look for good news.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 at 44 with a very rare (also incurable) but treatable type of Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey rather well.

Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. 

Always around to help more or just to chat.

Thanks Mike, I appreciate your words :)

I remember back in 1999 when I was going through the same process, back then it took 6 biopsies, 2 CTs and a year to diagnose me. I was 44 at the time and turned 67 last Nov....... over these 24 years I have seen my 2 girls grow up, graduate, get married and give us 4 granddaughters and I had a successful career in education until I retired.... and that is with me having a 7 in a million type of rare blood cancer........ there are lots of treatments available.

I have had treatments off and on over these years and like folks with Myeloma had the ups and downs but there are lots of options to treat Myeloma. I know many people who have been through treatment and are getting on with life.

The first step is getting clear information then take it from there.

Thanks, your words really do help, and your story is inspiring indeed!

Hi Algorithm,

Sorry to hear of your situation. I have been newly diagnosed myself and have to say for the first time in my life I am terrified. My wonderful wife is extremely supportive along with my 3 sons.

I am still waiting for scans after 4 weeks now and treatment is due to start in 2 weeks. I had a bone marrow biopsy 2 weeks ago and for me rhat has been the worse thing so far.

The consultant I met with this week made me feel so much better about treatment and prospects.

I have a wonderful granddaughter who although she doesn't know it yet is encouraging me to fight along with 2 grandsons due over the coming months.

There is a lot of support from the team, macmillan and maggies centres.

I wish you and your family well

Thanks Alamo. Sorry to hear about your situation, :( I am happy to know that you have a such a beautiful and supportive family to be with you in this difficult journey . I am sure it will make a big difference.

As for me, I have not been diagnosed yet, I am still hoping that my symptoms are not myeloma related, despite what my doctor fears. I am still waiting to be called to go through all these blood tests and the anxiety and the stress of having to wait (for how long?) without knowing what I could possibly have is absolutely destroying my mental health :(

Thanks again for your kind words Alamo57 and hopefully your story will be one of the good ones :)

It seems I might have had the start of this back in February when I was in hospital for kidney stones and a stent.

While under morphine for pain I vaguely remember the consultant urologist telling me I had a bit of anaemia,  I remember saying do I look aneamic. Regretfully this consultant didn't flag up a potential problem.

I went to get the stones and stent removed privately, went for pre op tests and date was arranged, on the day was going to head off got a call from private consultant who said he could not go ahead with the procedures due to abnormal bloods, he called my own doctor within 10 mins and she called me for tests. By my 66th Birthday I got a call from haematology asking me to come in. At this point I was still on thinking of b12 or iron, how wrong I was. I am hoping the delay of 4 months from my kidney stones doesn't cause any issues. From what I am reading they may have caught me reasonably early as only at the moment tiredness and fatigue.

The wait even though in my case has only been over 4 weeks does take its toll on your state of mind.

Hope you get results very soon. I am not an emotional person but while waiting last week I had to call macmillan for a chat. It was good being able to talk with someone other than family to save them.

I can't even imagine how you would have felt during your meeting with the haematologist :( I think they caught you early as well, which is good. Yes, the wait is terrible... I can totally relate. Good advice regarding calling macmillan, I may want to do that later . Thank you :)

You are welcome, if it's just for someone to listen to you, brilliant.

Hi there  I really really get what you are talking about...I have been having tests and this week a bone marrow biopsy with the thought that this could be Myeloma.  For several years I have had odd symptoms and fatigue but it was only 2 months ago that I discovered I had a new non iron related anaemia and non B12 deficient.  The haematologist is so open (which I like) but even he can't give me a definite diagnosis until those results come back.  My anxiety levels have been through the roof mainly because my partner is so upset and we haven't got any answers yet.  I have had one transfusion so far which helped for a few weeks with the fatigue.  I am lined up for the next one.  It has to be the waiting that makes it worse but I know from a previous cancer that it will pass.  In the meantime yes, talk to Macmillan and be kind to yourself.

I hope you get some answers soon

Take care