[gina45Participant]

Just a update into how things are going with my mum. When she went to the hospital today they have decided to put her on revlimid and steroids. She has to go back in 2 weeks to see the consultant. She also had to go to see the chest clinic about her lungs. They are checking that no fluid is getting in,if there was a little they wouldnt be doing anything,but if a lot has gone in then she may need another drain. The most worrying thing is mum has nodules(tumours) on her lungs.has anyone had this and if so what is the outcome, we are worried. Mum is looking ill and has lost more weight. We dont know what to think.Has anyone got any advice.
Thank you
Gina xx

[brochoParticipant]

Dear Gina your poor mum must be longing to get rid of whatever is making her feel so dreadful . I am surprised they have not admitted her , or would she not want that. It soeems a long time to have to wait 2 weeks before you see the consultant I think if I were in your shoes I would get hold of the specialist nurse and ask all the questions that must be worrying you the most and push to see the consultant ASAP!! I dont know anything about the nodules though Gina that would be my first question for the nurse or doctor/Its making me angry to think they have just left you all with these issues and not helped by telling you anything , even basic info like the nodules origin Hang in there Gina your mum is a strong lady and so are you so you will get mum through this bad spell. Try and get some rest too , you must be worn out love Bridget x

[gina45Participant]

mum hates the hospital Bridget. Dr baden is very good but has admitted that they are running out of options. This is the last chance the revlimid.mum has already said that if this doesnt work she isnt having anymore treatment. The nodules they have said if mum was an healthy lady they would investigate,but with mums other issues they arent doing so. She isnt looking well and has lost lost lots of weight, she is now down to 63 kgs. We in our hearts feel as though mum has given up and that she isnt going to get well. Although we do try to be positive it is very hard.
Thanks for your support Bridget. How are things going on your side?.
Gina xxxx

[eveParticipant]

Hi Gina
As you know Slim has been very ill,his weight went down to 63kgs,it is now 66,which is great,do not let them take the easy option unless that is what your mum want,attitude of mind is a great thing ,your mum does not want to be a burden ,she has to find the will to live.
I think you have to ask them straight out about your mums lungs,if you want to know,there does come a point when you feel it,s just another problem.
thats the way we feel about Slims lungs,the damage is there very little we can do about it.Myeloma in soft tissue is known,!!!

I hope she finds that inner strength, my thoughts are with you Eve

[tomParticipant]

Hi Gina

Sorry to read your Mum's not well.

I dont have any help for you re the Nodules 🙁 but as for the weight thing I was a Healthy 14 stone before I got MM went down to just under 11 stone? but after my treatment I am now (the consultant says) a Fat 14.11:-D and ye its a bit fatter than I was before the MM but my Zometa infusion can be doing that? think I only have about 4 more??? infusions?

Good Luck to your Mum Gina

Love and Hugs

Tom xxxx

[mhnevillParticipant]

Hi Gina

So sorry this year is getting worse for your Mum and the family. It does sound as if your Mum is getting worn out with MM, the side effects and the treaments. I do hope tht her lungs do clear to give her some relief. If they don't it may be you will need to face a decision from her not to have any more streatment. I agree with Bridget – you do need to be getting support from the MacMillan or other Specialist Nurses.

Do let your Mum know that we on this site are rooting for her.

Very best wishes.

Mavis

[gina45Participant]

Thank you so much for your replies,when you are all going though the same battles you still have time to help and support each other.
We are just taking each day as it comes now. I have stopped looking up about the nodules as i only seem to see bad things, so i will speak to the doctor when we go back to the hospital. We are hoping that mum may start to feel better in herself when she has the revlimid but only time will tell. We do go to see mum and just sit,chat laugh and remember the time when mum was healthy. Fingers crossed thimngs get better. But thank you all you are lovely people
Gina xxxx

[eveParticipant]

Hi Gina
I have to say I do not think I would be waiting 2 weeks for treatment.Your mum must feel they have given up on her,I know i felt like that with Slim at one time.
If you ask to speak to your consultant,they should be able to arrange something even a telephone call,they usually get together as a team to decide treatment,so might be worth phoning up.
Your mum needs a boost she must feel nothing is working,I can only say Gina if you had seen Slim in May this year and you saw him now, the difference is amazing,saying that his MYeloma in his bones has increased!!!!.but the quality of his has improved.
So start planning that wedding,and get your mum involved, Eve

[tomParticipant]

Hi Gina

Its sad and upsetting to see your Mum Poorly and it seems like its a constant waiting game? but it will be worth it 🙂
I am same as Eve, if you say me end of 2009 and start of 2010:: then see me now it shows it works 🙂

Good Luck and hope you have some help soon

Love and Hugs

Tom xx

[gina45Participant]

Thank you again for your support ,it does give us hope that you have all been there and look and feel better for it. Mum has now recieved her revlimid and steroids so fingers crossed that it works and mum starts to feel better in herself.
Gina xx

[tomParticipant]

Hi Gina

Pleased your Mum has started the treatment, I hope it runs smooth for her and the side effects are down to a minimum.

Love
Tom "Onwards and Upwards" xx

[gina45Participant]

Mum is going to see the consultant next wednesday so fingers crossed this treatment helps.
Thank you again
Gina xx

[brochoParticipant]

Hi Gina it must be a relief to know mum will get some answers next week All fingers and toes will be crossed and you have the positive vibes from all the lovely people on here too Now thats a force to be reckoned with!! I hope mum is continuing to feel a bit better , even if it seems slow it must help being at home with her family Lots of love Gina xxBridget x

[CarolBradley1Participant]

Can´t add any advice but I did just want to wish you all well. I know what your saying about they don´t want to investigate because of her other issues but how does your Mum feel? I know when I was very very ill I was beginning to feel I was a huge long burden to my poor husband. It´s only now that I am much much better and life is returning to something like normal I can see that the last thing he thought was that I was a burden – he just wanted me to be prepared to fight but knew it was my decision to make as at times it hurts to fight and he hated to see me suffer.
It´s such a very difficult time for you all but I think I might be tempted to ask your mum if she is prepared to let them investigate a little further to see if they can come up with a treatment plan. Anyway, it´s worth a conversation if only so you perhaps get an insight into how your mum is feeling.
Your doing such a great job of supporting her and we can only send our prayers and very best wishes to you and your family whilst you get through this rotten time.
Love Carol xxx

[gina45Participant]

Hello again, thank you all for your replies,
Mum isnt doing too bad she is feeling tired but thats not bad compared to how she has been feeling. Still taking revlimid and having injections to keep the blood clots at bay. Mum has had a set back. My gran (mums mum) has been diagnosed with bowel cancer being 92 they arent giving any treatment or even attempting to operate as she wouldnt be strong enough. So mum is obviously very distressed by this. Makes you wonder if all these cancers are linked but i suppose it will be many years before we find this out.
My sister and i are going to the infoday on saturday at manchester,not been to one before so we will see what its all about.
Anyway time to go to work so i have to go. But hope that you are all ok ,take care of yourselves.
Gina xx

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