Myeloma would like to chat

Is there anyone who is recantley been diagnosed with myeloma or who is in remission would be good to chat chris

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Hi @Chris-2, a great big welcome to our community forum and what a brilliant idea to post this thread. I have another type of blood cancer but I would be interested to hear more about you?

Me too - welcome @Chris-2. I’m sure there will be some members with the same diagnosis who can offer their experiences. How are you doing at the moment?

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Hi Nichola, so kind of you to reply I’ve not been on this site very much, still learning lol.
I went in to remission a month ago but doesn’t feel any different, both of my hips are very painful due to the damage from the myeloma caused prior to being diagnosed.
The feeling of loneliness and constant anxiety never seem to go away although I’m never alone.
It would be really good to keep in touch and share experiences.
Stay safe Chris

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Hi Erica thank you so much for your reply i’m sure all the same feelings and anxieties apply to most types Of cancer which ever one you have Prognosis is different for them all . I’m always interested to hear your experiences and fears.
Look after yourself and take care
Chris

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Hi @Chris-2. You’re right, whatever the type of blood cancer we all share a lot of same fears and anxieties. Lots of the recent conversations have been around anxiety, sleep issues and worries about going out. They may be worth a read. This is such a good forum to be a part of as everybody understands. Like you, I’m not alone and have lots of wonderful people around me. However, it can still be a very lonely experience and sometimes, only those going through it can understand. I’m sorry to hear you are in pain though. Do you have a good medical team around you? It’s been a strange few months hasn’t it! I’m glad you found us and hope you find it a place that supports you in many ways. Keep sharing x

Hi @Chris-2, it must be very painful, frustrating and draining to be in pain.
I have heard a lot of people say that when they go into remission that they feel they should feel overjoyed, but just feel empty and anxious, while others are so pleased around them.
I also know the feeling of loneliness that you and @Nichola75 describe although you have people around you.
I have definitely found my emotions have been all over the place since isolation, I got so excited to get an online food delivery and other things have really made me anxious and I am sure I am not dealing with what personally stresses me as well.
Yes, please do keep in contact as we are here to support each other because as I have described in my reply we are sometimes the only people who really understand each other and if you feel you would like to talk you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk. Take care.

Hi Chris

Hope you’re having a good day today. I too have myeloma. Diagnosed June 18. Six months induction with DVT and STC in February 19. So far so good in remission for now . Im presuming you have had to go through treatment during Covid? That cannot have been easy at all. Sorry to hear thav you have pain still. Did you find that got a bit better with the treatment though?
Its a difficult thing to deal with mentally all this relapsing/remitting stuff to come to terms with. I find the worries come and go . Lockdown and shielding has just added to the anxiety I think! Holidays cancelled, outings postponed and simply worried to leav the house most of the time.
Unfortunately it looks like the news is worsening and I am thinking that shielding will be recommended again before long!

Hope you find a solution for your ongoing pain.
Do you have a CNS you can contact?

Best wishes Sue

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Hi @Chris-2 I was diagnosed with Myeloma in July 2018. I had 2 weeks of intense radiotherapy, followed by 6 months of chemo and then a stem cell transplant. The prep for the transplant and the after effects of the transplant were the worst part of it. I did bounce back from all of the treatment very quickly and have been in remission officially for a year now. Lockdown has taken a big chunk out of my remission and I think it’s that more than any of the treatment that has caused me the most distress as I was looking forward to doing so many things this year before the cancer returns. You’ve come to the right place though as everyone on here is very supportive and it feels like a good place to say what you are thinking.

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Hello Franko

Looks like you and I are on similar path. I completely echo your sense of regret about the way lockdown has stolen our remission time! Such a long way through all that treatment with the hope at the end of something like a normal life and now Covid! I’m struggling at times to feel very motivated but I know I must make efforts to get fitter and stronger for the future. Now looking at the long winter ahead and possible shielding again . Hard to be cheerful and optimistic some of the time. Hope you’ve got the sunny weather where you are today. That at least is something!

Best wishes Sue

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I too have myeloma, diagnosed May 2018 and had SCT in Feb 2019 since when I’ve been in remission. For me it didn’t help knowing remission would be on average 30 months longer if lenalidomide was made available by NICE as low dose therapy after SCT. I’ve dealt with that by importing a generic lenalidomide (which is legal in UK) with the consent of my consultant. So I’m getting it, albeit my bloods won’t tolerate a full dose . This feeling that I’m doing what I can to get lenalidomide maintenance for myself and others (by writing to whoever, highlighting the issue etc) helps me with the psychological aspect of having a relapsing disease. I am lucky that I haven’t got lesions (yet) so superficially can just get on with life, covid precautions permitting. I do feel fortunate that my treatment was pre covid, and that I’ve had two significant trips since SCT though. The diagnosis always shocks to the core, and I rarely forget I’ve got myeloma now but I do now feel accepting of it. In terms of pain management, have you had a referral to a pain clinic? Some fellow myeloma patients have found this helpful. Pain isn’t always permanent, one of my myeloma friends was wheelchair bound for six months and had pain and limited mobility for a year or so, but 15 years on digs an allotment, is a member of a walking group and thinks nothing of driving 100s of miles. With myeloma, always keep hope alive, our ‘journeys’ are so individual.

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Hi Chris I was diagnosed with myeloma back in April after having being told I had lung cancer that was inoperable. You can imagine the emotions I went through Firstly having to tell my husband and children that about the lung cancer and the outcome. A. Few days after this diagnosis one of the consultants said they didn’t think I had this. Going to do more tests which eventually confirmed she was correct. Some weeks later I got a phone call telling me about the myeloma. By this time the family and myself had ourselves convinced that it had been an undetected infection that hadn’t been treated properly (as that was what had been mentioned by the consultant). Anyway I’m currently undergoing chemotherapy. I’m on my 6th cycle and have another 2 to go. Infusions Of vitaminD and calcium have just begun this week as I’ve had to take vitamin D supplement to bring my levels up. I’m happy to chat at anytime. Take care and stay safe x

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Hi @Vmj6, a great big welcome to our forum. I cannot imagine how you have felt during lockdown with the shock of that, your lung cancer diagnosis and then your myeloma.
It must have been so hard having to have those talks with your husband and children.
I find this community forum so supportive as I can share how it really is for me those fears, thoughts, feelings, practicalities and I know others will understand.
Sometimes I find that I need to talk to someone outside my family and friends. You can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to.
Also perhaps your husband and children might be going through similar thoughts feelings to you. The Blood Cancer UK support line is there for them too.
The main thing is to look after yourself, you and your body are going through a lot emotionally, physically and practically and have lots of treats for yourself and your family.
If you don’t mind me asking how old your children are, how they took your news and how you and your family are communicating now?

Hi @Vmj6 and a big welcome to the group. So great that you feel you can share your experience and support others. It sounds like it’s been a really stressful few months. So glad you have an amazing family around you. How are you managing the treatment and how are your husband and children? X

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Hi Chris,

I was diagnosed with Muliple Myeloma in May 2019 aged 48, ( big unexpected shock). I had 6 months of chemotherapy followed by a stem cell transplant in November.

I went into complete remission in February this year ( 2020).

I too had pain but in my left arm caused by the lesions on the bone from the cancer, this was quickly dealt with after one visit to the radiotherapy department.

I consider myself very lucky compared to some as I had very few side effects from all the treatments apart from bone pain whilst injecting the GCSF drugs to boost my stem cells prior to having them harvested and a very sore bottom for a week due to the high dose chemotherapy upsetting my bowels during the stem cell transplant.

I’m obviously happy to have gone into remission but constantly think about the condition every day and wonder when it will return!
I found the recent Covid pandemic & shielding I had to endure to be more scary than the actual cancer diagnosis!

I was just getting my life back to normal and returned to work in March before I was told I had to shield for 4.5 months, and the thought of catching Covid terrifies me, especially after the government specifically named people with Myeloma to be at particularly high risk!

My emotions have been affected from the past year and I find myself getting upset very easily now, even from watching things in TV.
I cried watching a Christmas film today with my 8 year old son ( ok I admit, a bit early for Christmas films!) :grimacing:.

I hope they can resolve your hip pain and feel free to have a chat anytime.

Take care everyone.
Darren.

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A big welcome to the forum @Darren thanks so much for sharing this. I can only imagine what a massive shock your diagnosis must have been for you, and how tough it must have all been to get your head round. So understandable that this past year has had such an impact on your emotions - something which as you can see from this forum, you’re certainly not alone in!
Our support line is only a phone call or an email away if there’s ever anything you want to talk through with us. I really hope you find this forum of some support to you going forwards, even if just as a reminder that you’re not alone.

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Welcome @Darren, gosh, I completely understand how overwhelming everything seems at the moment, and that’s only natural. My emotions are All over the place! I just commented on another thread ‘Watch and Worry’. Have a search around the site. There are so many discussions that will be useful. Your thoughtS are shared by so many! It’s great that you’ve found us as it really is a great support.

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Hi @Darren, welcome to our community forum and just telling us how it has been for you, Christmas film and all, shows the value of this site and how helpful you will have been to others.
Yes, we are here to support you and if you need to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
I have also found this year to be a roller coaster of emotions, I got so excited to get an online delivery slot and the next minute I am crying at the least thing. Yes, Covid is scary and out of my control.
Take care, keep posting and keep watching the films

Hi Chris
I was diagnosed with smouldering myeloma in 2016 and it became active this summer. I start chemo today. Do keep in touch if you want to chat re your experiences.

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Hi Mark, I have responded to your other post under ‘MRI and biopsy - psychosomatic pain’ and you are really demonstrating the supportive angle of this forum, thanks so much, when you have so much going on yourself. Please do let us know how you get on today.

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