[slimynoseParticipant]

Hi all,
Been lurking for a couple of weeks but thought I would introduce myself. I’m 45, mom to 3 kids aged 13, 11 and 9. Diagnosed a few weeks ago; only symptoms are a lesion in my jaw, 2 other tiny ones in rib and scapula. Pprotein 19.6. Diagnosed ‘by accident’. Sorry if this is triggering for anyone (I know how fortunate I am) but I feel as fit and well as I ever have done, absolutely no symptoms or pain at all. Cannot get my head around the fact I have this disease, and that I am taking some serious meds (again, so grateful) that will likely knock me around. Started DVT yesterday, so far so good. Have benefited so much from reading the comments and stories on here so thanks to you all, you help folks out more than you know.

[mulberryParticipant]

Hi Slimynose
This diagnosis is always the most profound shock, & I think the natural fear, having been diagnosed with an incurable disease, is that we are on a slippery, downhill slope. However that really isn’t the experience of many, thank goodness. I too have been fortunate enough not to have pain or much in the way of symptoms, and I’ve now had almost 3 years since SCT of almost normal life, so much better than I’d realised would be possible. Keep hope alive, & best wishes to you.

[tony642Moderator]

Hi Slimynose,

I am one of the forum peer volunteers, I was just wondering how you were progressing with treatment etc. If you would like to, please leave a message and let me know how you are getting on.

Regards, Tony

[slimynoseParticipant]

Hi Tony, thank you so much for thinking of me, I have been doing well but have had a setback and didn’t know who to talk to- then I saw your message!
My consultant phoned today to say that my response to VTD isn’t too good. Proteins began at 20, and monthly have gone to 13.6, 12, now 10. He suggests one more cycle and then DT-PACE. I haves free concerns, one being leaving my children to go into hospital. My youngest is already really upset about the thought of my going in for the transplant; now I will likely have more hospital stays.
My other worry is why I am not responding to VTD, and wondering if I have a form of myeloma that will be resistant to treatment. The consultant says genetic testing isn’t really done on the NHS and doesn’t really change treatment decisions anyway. I guess I’m hoping a good remission is still possible, even if I have to have DT-PACE. So many questions!
I think when first diagnosed I consoled myself with the fact I am young and healthy and I had a great chance of kicking it into touch. Today has been a reality check.

[tony642Moderator]

Dear Slimynose,

Thanks for getting in touch. I am really sorry that things do not seem to be going your way at the minute. I havn`t had DT-PACE so I cannot tell you much about it. I have not heard of anyone else whose Myeloma is resitant to treatment.

I know you probably have, but have you tried talking to the children openly and honestly about what you have and what you need to go through? and that it is necesary for you to go into hospital to try to get better? Kids are more resilient than yuo think! There may well be counselling available for children to help them cope, have you looked at that?

I know it has been a setback when you thought you were doing so well, but please remember that the medical staff will always act in your best interest and they will recommend things which they think are for the best.

Have you tried coping mechanisms for yourself? I have always said that dealing with cancer is as much an issue in your head as it is in your body. You have to try to look after your own mental health.

There is always hope although it is likely that more treatment is required, but keep your chin up and keep strong. Please keep in touch and let me know how you get on.

Regards, Tony

[copterParticipant]

Dear Slimynose

I have some experience of VTD not fully working and being put on DT pace last year

If you would like to email I would be happy to share my experiences

copter30@hotmail.com

Best regards

Simon

[tony642Moderator]

Hi Slimynose,

I just wanted to do a follow-up to see how things were going, particularly with th echildren? hopefully you will have got some help, and I am hoping that as you have not posted on here recently, it is a good sign and things are improving.

Please let me know how you are getting on.

Regards, Tony

[slimynoseParticipant]

Hi Tony, again so good of you to check in. I’ve definitely reached plateau with VTD, so yesterday I found out it’s DT-PACE for me, possibly even next week. The kids are naturally anxious; in all honestly I think they forgot about the whole myeloma situation because life was pretty normal and I’m feeling fit and well. Now they are a bit more suspicious and unsure. But they will be ok. I have to say that I’m struggling a bit emotionally, although I have lots of strategies to use when I need them. My consultant says my genetics are not high risk at the moment, but that doesn’t stop the mind doing overtime, analysing why the treatment didn’t work. This is the most difficult period since my diagnosis, but this too will pass! Again, thanks so much for being there, it really helps.

[copterParticipant]

Sending you all Best wishes with DT pace, I am evidence that you will come through it and it will do its job for you.

Simon

[tony642Moderator]

Hi Slimynose,

Sorry for not responding for a couple of weeks but I have not been available. I just wondered if you have had an update on whether your DT-PACE is working or not, and also if you had spoken with the children and if so, how they took it.

Keep in contact with us and let us know what is happening.

Regards, Tony

[slimynoseParticipant]

Hi Tony
Such a lot has happened in the last month or so. I have had 2 rounds of DT-Pace. Each one meant a 6 night stay in hospital. There were tears over face time, especially at bedtime, but the family made it through. Unfortunately, my pp’s were 8 going in to the treatment and are……still 8. So I’m bummed that I had so much toxic chemo and had to be away from the kids, for no benefit. Consultant says I need a tandem transplant, so it looks like we are in the foothills of some fairly big mountains yet to climb this year. I’m starting to feel more anxious about appointments now, as I haven’t had a single piece of positive news since September. Genuinely considered not picking the phone up on the consultants call yesterday..,

[lilibParticipant]

Hello Slimynose. I read your thread this morning because I just posted a query myself. My husband is the one with Myeloma, and we have just had a bit of a set-back in the treatment, and I think that is why I was drawn to your post.

I know that it is very hard to stay positive when something doesn’t go according to the plan. We have been looking forward to the transplant, and now it may not even happen, so I can understand your reluctance to talk to the consultant for fear of getting more bad news. However, things can go up as well as down! It must be hard to explain things to your children, especially if you are feeling uncertain about things yourself, but try to keep in mind that this is one of those diseases for which new treatments are being developed all the time, and at your age, there might even be a cure by the time you reach pension age.

Do talk to your consultant. And do tell him/her that you are feeling mentally ‘brutalised’ at the moment.

Keeping my fingers very tightly crossed for you.

Lili x

[copterParticipant]

My pathway has had similar bumps as you know S.Nose – my reaction to DT pace was not as effective as the consultant would have liked this time last year but I went on to have SCT in July.

It’s hard not to despair, but keep going, focus on the day to day and the small moments of pleasure that can be found therein.

Feel free to email me anytime

All the best

Simon

[Author]

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