New here? Feel free to introduce yourself here 👋

[Nichola75]

You haven’t rambled on at all and if you do, so what. We all have a ramble on here and sometimes it’s just what we all need!
It’s great to here you are focussed on getting healthy - funny, I did that after my diagnosis and actually made quite a few positive changes.
Make sure you treat yourself a little over Christmas. I look forward to getting to know you more X

[Jules]

Hi @K2K
Your story is so similar to my own. My diagnosis was incidental. I had a 12/8 cm abdominal mass. I was being investigated for indigestion! Turned out I had follicular lymphoma. My doctor said exactly the same thing it’s not curable ( which at the time was horrific and scary) but you are more like to die with it than from it.
That will be five years ago on the 18th January and my husband is whisking me away to celebrate:).
Yes I do still have lymphoma but it’s stable and I’m fine. And yes just as likely to be run over by a bus is my saying.
The chemo was very tolerable I got through by drinking lots of water to flush it through, a thirty minute walk in the fresh air every day whether I felt like it or not and daily yoga via you tube. I’m now hooked on yoga
Do keep us up to date on how you are doing and try and have a good rest over the Christmas break.

[K2K]

Hi, so petct results inconclusive. I might have SLL not Follicular.
My doc says if SLL i get radiotherapy to shrink the big mass rather than the chemo for Follicular.
Not sure why there’s a difference in treatment but I understand in the short term radio has less side effects so i suppose that would be good.
It threw me though as I’d psyched myself up to hear about a chemo regimen. Felt a bit disappointed and frustrated but trying to focus on its good they’re taking time to get the right diagnosis and that there’s still plenty of time for them to do it.
It is weird though knowing there’s this thing inside you and wondering what it’s doing - I’m telling myself this is practice for after treatment and remission when I’ll be on watch and wait !

Mdt meeting again in a week to decide if more biopsies needed.
I’m not good at waiting lol but I guess that’s pretty normal with this disease - crazy there are so many forms of it.
Good news was still low grade. Three more swollen nodes found, 2 para aortic 1 groin, but none as big as the large mesenteric mass that kicked all this off. Brain, lungs and all solid organs clear. So lots of things to be grateful for.
So, after a minor wobble I’m back to positive thinking and trying to fill the next week with distractions while i waIt !
After I take down the xmas decs think I’ll get to clearing the pond - figure better do it now while I have the energy and no trashed immune system

[Erica]

Thanks for the update @K2K and all your emotions and thoughts seem very natural to me.
I have another blood cancer but I can remember a sensation of wanting to pull it out of me.
The not knowing, the waiting and the wobbles seem to be par for the course and I do not think get any easier for me.
Before we moved to our flat we had a house with a pond and I hated cleaning it out. Coming to think of it I am not keen on taking the Xmas Decorations down either as they never seem to fit into the boxes they came out of.
Look after yourself and be kind to yourself

[K2K]

Thanks @Erica it’s comforting knowing others feel the same x
Best wishes to you x

[Anjo47]

Hello everyone! My name is Anjo, I was diagnosed with ET Positive JAK2 5 years ago and Last year, I had my Bone Marrow Biopsy and was Diagnosed with Polycythemia Vera. My spleen is slightly enlarged. It’s been a roller coaster ride for me. When my HCT is high, I have Therapeutic Venesection. And Bec I’m allergic to Aspirin, I’m taking Clopidogrel. Physically, I’m feeling ok some days and the opposite days (itchiness after shower; stabbing pain on my tummy; feeling dizzy and bloated; lower extremities pain; vertigo feeling). But mentally I’m really feeling alone, exhausted. Up to the point that I just literally cried out of the blue. I feel like nobody cares? I don’t have a family here, I have my partner though. When I communicate with my family back home, they just don’t care… that kind of feeling. And that really hurts me! Big time! My bro just laugh at me when I told them that I have suicidal thoughts?! I’m very depressed.

Have a lovely weekend everyone!

[TanyaBloodCancerUK]

Good morning, @Anjo47, thank you for your post and a warm welcome to our community. It sounds as though it’s been an understandably difficult time for you, and thank you for taking the time to share how you’re doing with us. I’m sure others on here will share their support for you, and I will send you a direct message.

Take good care,
Best wishes,
Tanya.

[Nichola75]

Hi @Anjo47 and welcome to the forum. All of us - at different times in our journeys - have felt alone, sometimes even if we have family around us. I’m so glad you have found the forum as I really thinking will be such a good space for you to say how it really is, with people who understand, in turn helping you with the feelings to you are having at the moment.
It must be very upsetting when your family responds in the way that they do. This may be for many reasons but usually it’s lack of understanding. Where are your family from? Is your partner supportive?
I hope you have read @TanyaBloodCancerUK message that she said she has sent you? And remember, the support line is just a call away.
We all get those feelings so keep using this space to let us know how it is for you. There is always somebody to listen

[TanyaBloodCancerUK]

Hi @Anjo47, I thought I’d also mention that our support line is open at the weekends, too (10am to 1pm) so if you need support please don’t hesitate to call or email us (0808 2080 888 or support@bloodcancer.org.uk).

Best wishes,
Tanya.

[Erica]

@Anjo47 a great big welcome to our forum I am so glad that you have found us, you are no longer alone now you are part of our forum family.
I think a lot of us have felt so isolated and lonely since our diagnosis upon occasion but you must feel it even more in your situation.
I am so much emotional since my diagnosis and can cry when I least expect it.
I have found that this forum is the one place that I can be really honest and know that others will understand.
Perhaps it might be worth having a chat with your GP and tell them how depressed you are feeling and see how they can help you. I found I counselling helped me and I believe Macmillan might assist with limited sessions.
I can often feel worse and more isolated at weekends and the Samaritans are available 24/7 on 116 123.
If you need to talk to someone at Blood Cancer UK the support line is there for you on 0808 2080 888.
Look after yourself, it takes courage to post on here, and please keep posting.

[Nichola75]

Hi @Bitsy and a huge welcome to the forum. It’s a really brave step to join us and I promise you it will be one of the best decisions you made!
It sounds like you have had a really difficult few months with both diagnosis, treatment and loosing your parents. Any of that on its own would be tough, let alone all at the same time.
I found that I felt more alone when treatment finished and appointments became less frequent. My security blanket was gone and it was more down to me to keep an eye on anything I was concerned about. It’s a scary time and takes a lot of adjustment and getting used to. What you have now is a family forum who are here to support and listen. There is also the support line if/when you feel ready to talk.
In the meantime, please keep posting X

[Erica]

Hi @Bitsy I am so glad that your counsellor suggested you join a forum and that you have found ours and had the courage to post.
You are now not alone you are part of our forum family.
I think our diagnosis brings so many feelings of loss and on top of those you have lost both your parents, that is a lot to deal with.
I really relate to your feelings of not knowing what is the disease and what is something else or in your case the treatment.
My husband is a head in sand type person and cannot take my emotions.
I find this forum is the one place where I can say how it really is for me and people will understand.
Also if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Please keep posting I look forward to hearing more about you.
Please be kind to yourself

[2DB]

I totally get you
Once the hustle and bustle of appointments treatments and stem cell transplant had calmed down I found myself not knowing where I belonged and eventually admitted to my consultant I needed some help. She referred me to a clinical psychologist and I also attended our local hospice drop in mindfulness class and the lovely lady took me to one side and offered me one to one. Between the two I finally started to grieve for the person before myeloma and accepted they I was the now me living with myeloma.
I was diagnosed with a form of PTSD after receiving a life changing diagnosis
Myeloma UK I believe have Peer Buddy support which may be helpful

Peer Buddy service

I was diagnosed in 2017
Two transplants later I’m still here
I decided I couldn’t give myeloma back so I was going to take it with me, do what I had too to get well to live my precious life

[2DB]

It sounds like you have done well with VDT to get you to stem cell transplant
Can I ask are you ok with giving a little bit of history as to how you found out you had myeloma
It isn’t curable but very treatable
It’s quite normal to think about death especially as you were grieving for your parents
I found people reluctant to ask questions so I would instigate conversations around myeloma to anyone that would listen

Feel free to contact me privately if you wish

[2DB]

Good luck for the 25th I’m
Guessing 100 days post transplant
Did you have paraproteins or PP for short

Sounds like you were whisked into chemo like myself
I was diagnosed on a Wednesday bone marrow biopsy done came back inconclusive CT scan following Tuesday another bone marrow biopsy and started chemo DVT (Dex, thalidamide velcade) dara wasn’t available then on the Friday
My bone marrow showed 75% myeloma

My PP was 45 and light chains over 2000
My first transplant gave me a good partial response of light chains 66 and pp 5

I have since had dara Dex velcade to second transplant and it worked really well
I’m on maintenance dara and my PP is less than 2 as are my light chains
This combo worked better than my first line in 2017

[2DB]

Velcade is a culprit for neuropathy
Do you have any lesions?

Your body has been through the mill with the transplant wiping out your immune system and rebuilding again

Keep a diary of the niggles/pains that your having
That’s good that you have reported them to your CNS

Just be mindful that numbers may not be less than 2 at 100 days that doesn’t mean that the transplant hasn’t been successful and those numbers can continue to reduce at each blood test.

Myeloma is relapse/remission

The transplant will put the myeloma into remission I call it the sleeping phase and it’s not doing any damage.

Are you having Zometa at all

[PollyVera]

@Bitsy @2DB sending to you both.

[2DB]

I had a fracture in my T9 had radiotherapy to that and a few other lesions ribs/pelvis/shoulder
I gained new lesions in 2021 in T12 C3

I still get pain though I don’t take strong opioids anymore this second transplant has enabled me to take paracetamol I’m guessing because my numbers are so low that the myeloma isn’t doing any damage but the damage already there from 2017 isn’t going away

I have been on Zometa now for 6 years because of my boney disease

Myeloma never goes it just sleeps/wakes/sleeps

Edit
My consultant back in 2018 referred me to my local hospice (they do all sorts of treatments for living with cancer) for physio