Hi all, I’m new to the forum so thank you for having me! I was diagnosed with MM June 2022 and have had all my treatment including a STC in February this year. My cancer was discovered after 3 months of the most excruciating back pain that had me crawling out of bed to go to work, in the end I just couldn’t go in. I was told I had a kidney infection, given voltarol to try, Naproxen then finally the saw sense and sent me for an MRI to James Cook A&E this was a Friday so after waiting 12 hours to be seen they discovered a fractured spine and sent me home the following morning with co-codamol. I was then asked by my GP to go in for blood tests and then I was diagnosed, August I started my treatment, why do they not do the blood tests earlier???
Anyway that’s me I’m on high dosage of painkillers plus Oxycodone and have been given 12-18 months remission which I am determined to beat!! I will not work again due to the pain, 6 months beforehand I lost my mum to lymphoma 20 years she had that, I still haven’t properly grieved for her due to all this it was 2 years yesterday since we lost her I do miss her dreadfully.
Anyhow I came on to ask about childhood immunisations after STC I understood that I shave these again but when?
Sorry for the long introduction hopefully someone will be kind and respond.
Hi @Anita1 a great big welcome and thanks so much for posting your, at least, 18ths so clearly.
To respond to your question about childhood immunisations first, it is best asked of your medical team as they know you and your whole medical history.
Have you got a Specialist Nurse, GP or Consultant you might ask.
I am so sorry that you lost your mum 2 years ago yesterday, that is no time, you had your mum all your life.
In my experience both your diagnosis it might be in the mix too.
Do you think that bereavement counselling might help, I have found it very helpful in the past to help me come to terms.
If you would like to talk to someone at Blood Cancer UK the support line is 0808 2080 888.
I look forward to hearing more about you so please do keep posting.
Living with chronic pain is exhausting.
Look after yourself
Hi Erica
Thank you so much for responding it’s so disheartening when people don’t.
I have asked my care team and consultant ( the same care team and consultants as Mum! Was good as I know them all but very emotional)about the immunisations and was told at the the end of your treatment??? Oh well I will ask again I go once a month to have that bone strengthening stuff I can never remember what it’s called
I may call the line as perhaps someone may be good to talk to re bereavement.
Speak soon xx
Hi @Anita1 it seems to me that you have thought things through and you have a plan. I am impressed.
The Support Line are all lovely. and are there for you. @BloodCancerUK-SupportTeam
Be ever so kind to and look after yourself, oh, and please do keep posting.
Hi @Anita1
I have myeloma diagnosed 6 years ago
I’m two stem cell transplant in one in 2017 and the other 2022
My myeloma was found after being admitted to A&E with a gall bladder infection
I don’t think Drs are aware of myeloma as many of the symptoms are like other issues
I thought I was menopausal with aches and pains
I would fall asleep in my car after work waiting for my daughter to finish school
My myeloma was active my consultant thought 6-8 months before I was diagnosed
I started my re vaccinations 3 months ago having had my third lot Friday
I also had my flu vaccination 3 weeks ago
Here is the re vaccination schedule I have
Zometa is the bone strengthening infusion
Hello 2DB
Thank you so much for your very helpful response I will certainly ask about my immunisations again, my team believe I have had the MM for well over a year before diagnosis, the heamotology nurse even remembered me complaining about my back on one occasion at taking Mum in for a check up.
How did you feel when you relapsed? What were your symptoms? Speak soon xxx
Hi @Anita1
I was not in a good way when diagnosed i was pretty poorly
I have boney disease with many lesions and I had a tumour at my T9 which fractured
After my first Stem cell transplant I had Zometa monthly so my bloods were kept an eye on
When I was relapsing my bone pain increased in my lower back and my light chains were on the rise along with with PP
I squatted down to put clothes in washing machine and couldn’t get back up. At this time I was on 20mg of oxycodone and 300mg of gabapentin and the pain was awful when I managed to get up I couldn’t stand it was too painful so I sat down managed to get to bed
I had physio the following day and she rang my team and said I needed a scan
I had a PET scan and it revealed more lesions at the T12/pelvis/C6
My light chains were in the 200 range
Because of the boney disease I started DVD a month later
Otherwise I felt ok in myself just experiencing more pain
Hi and welcome as always the wonderful @Erica has given you great advice.
There is some useful information on
The wonderful bloodcancer nurses maybe able to help too @Alice_BloodCancerUK
Hi @Anita1, how are you doing today? A very warm welcome and thank you for taking the time to share what you’ve been through. I appreciate you’ve been through a lot, and I’m ever so sorry to hear about your mum. It must indeed be a lot to process. If you do want any support at all, please don’t hesitate to call us (0808 2080 888) or you can email us if you prefer (support@bloodcancer.org.uk). I appreciate you mentioned bereavement support and we’d be happy to be talk about this with you, too.
I agree it would be good to check in with your team about your immunisations as they’d be best-placed to advise on what you need and timelines, for example. Our colleagues at Anthony Nolan have a section about this on their website- Dealing with infections | Anthony Nolan. If you scroll down on this page, there’s a section titled ‘vaccinations’ with a bit more information.
Take good care of yourself, Anita, and do remember we’re here for you, so please don’t hesitate to reach out if that would help in any way.
Best wishes,
Tanya.