Well as the title says I am so confused, I was diagnosed on 29th December 2021 with MM at this point my consultant was adamant he wanted to start treatment asap, we have moved our wedding forward due to this.
Today I have been for my treatment plan and have been advised I am being put on watch and wait, no time scale given just monthly blood tests.
Paraproteins are at 34 and have been steady since November.
I have a B12, folate and iron deficiency which apparently very uncommon to have all 3.
We have been referred to a facility team to look into freezing eggs as they have said that they will be treating but they don’t know when.
I know the consultant is pretty keen to use the new treatment DVTD but obviously that is so new.
I just don’t know if I’m coming or going at the moment, one breath I’m being told yes we want to treat, then its no we want to wait, and you need to freeze your eggs.
I feel like this is far to adult for me to deal with! Any advise would be great as I don’t even know how I am meant to feel about this right now xx
Oh @Fighting_MM , this really is confusing and so difficult when your treatment plan is changing and feels out of your control.
Freezing eggs is very positive looking forward so that’s great for the future and as chemo can be harsh on fertility I guess that needs to be done first.
You have your wedding to look forward to, it’s earlier than anticipated but you will love that day regardless of the timing. That’s an event that will be wonderful and totally under your control.
I think living with mm is a bit unpredictable sometimes and treatment has to match the current status of the disease so things probably will change on occasions but the specialist will know the best course of action for you. Don’t be afraid to ask questions of them if you feel confused or unsure of anything. Write things down to take with you for appointments if this helps or speak to the haematology nurse, they will be able to discuss treatment plans with you. Xx
Hi @Fighting_MM, I just cannot imagine how anxious and confused you are feeling and I would definitely still be in shock if I were only diagnosed 3 weeks ago.
To add of course all your wedding plans into the mix, well.
@Lyn99 has given you a great response.
Fertility is so often not talked about when it should be and I am so glad that your consultant has advised that you freeze some of your eggs, in case they are needed later on…
Your consultant has probably looked at all your test results and other factors that you have and has decided that they think your treatment plan should be ‘watch and wait’ or ‘active monitoring’ through monthly blood tests.
This appears to be fairly common with blood cancers, I have another blood cancer, but I have been a very lucky girl, and I have been on ‘watch and wait’ for 18 yrs.
Recently I was referred back to my GP to monitor me and fast track me through to the hospital if needbe. The blood test might be weekly or far less frequently.
I really know what you mean about the whole thing being just too adult.
There is no right or wrong way to feel right now I expect you have so many fears, thoughts and emotions whizzing round, just be ever so kind to yourself and don’t be afraid to ask for help when things just get too much.
You have a wedding coming up so just you and your partner work together and keep communicating.
There is information on watch and wait on the Blood Cancer UK website and we and the Blood Cancer UK support line are there for you.
Keep posting please xx
Hi @Fighting_MM. @Lyn99 and @Erica have said it all and I can only reiterate their advice and thoughts.
It must feel like you’re in the middle of a bad dream. Not only have you got to deal with the diagnosis but having to think about future fertility options which must have been the last thing you thought you’d be doing. It’s just so much to take in.
At the moment you can only take each day at a time. Be kind to yourself, go with what you’re feeling and keep sharing on here.
You must have so many questions. Make sure they are all written down in case you forget them.
I’m on watch and wait for Lymphoma and it’s a tough one. There are some great booklets on the website and the support line of you need it X