[mandyphillips41Participant]

Hi everyone, well I got the worst news yesterday “Your cancer is back!
I got told In November 2013 that I was in remission so that’s roughly 7 weeks. The worst of it is that I was constantly telling my consultant that I didn’t feel well so how could i possible be in remission?
I don’t know how I am feeling, I suppose I feel like I am talking about somebody else. This time I have decided that I am going to go to The Christie Centre in Manchester. I have given 16 months of my life to my local hospital and I am still poorly so I think I should try somewhere else and they call Christies the Centre of Excellence. I go to see my old Oncologist tomorrow so wish me luck from a very depressed Mandy ❌❌

[DizzylizParticipant]

Hello Mandy,

Sorry to hear your remission was only a few weeks , I’m a carer for my husband kev who got six months remission which was truly devastating at the time, kev said he knew something was wrong for a while before it was confirmed. That was over a year ago and after another relapse with velcade he is now been on revlimid and dex for a year now and yesterday was told he is stable and he’s feeling good, so Mandy I hope everything goes well for you with your consult: and you get the best treatment in this your next stage, take care, keep well.

Love liz xx

[sanParticipant]

Sorry to hear that you are feeling so low, you are wise to try another way forward,there will be another treatment plan for you and hopefully you will be in remission again soon, love to you and good luck tomorrow when you see your Consultant hang in there and be determined to get what you need! San xxxx

[HelenParticipant]

Dear Mandy
Devastating news for you, I took a long time to get my head round relapse and found the next toxic round of treatment difficult. I’m now in remission again and feeling more positive at last. The anger and disappointment that we feel when this disease comes back is very hard to bear. You are probably right to seek a second opinion and I hope a new treatment plan works quickly.
Helen

[eveParticipant]

Hi Mandy

You must be feeling awful at the moment,but it sounds if you were just waiting for your worst fears to be confirmed.

I think you are doing the right thing getting a second opinion,check if your consultant is a myeloma expert rather than just a haematology expert,in theory you are going to be an unusual case,you do not mention your bloods or BMB figures plus any full Skelton ex rays or MRI scan results,have they repeated the test??? Also you might find you come into the higher risk factor,these things are all important,before you go on to choose your next treatment,also are you on trials??

It has taken me 3 years to find a lot of information ,that we wish we new at the beginning,I do not know if we would or could have done anything different,but we never had that option.

Good Luck Eve

[SuelParticipant]

Mandy I am so sorry to hear your news, I have followed your story with great interest. I to live on the Wirral and had my sct in the royal. I only came out in November, so it’s early days yet. I hope you have great success at the Christy,keep us posted. Xx

[mandyphillips41Participant]

Hi Everyone & thank you so much for taking the time to reply.
I was at the hospital today & had a bone marrow extraction (owwww) they let my sister come in with me which definitely helped me. I go back tomorrow morning for a skeletal X-Ray & I have received an appointment at the Christie Centre in Manchester. Just hoping that whatever I choose it’s the correct regime this time. I will keep you posted. Thanks again Mandy xx

[mandyphillips41Participant]

Hi Everyone.. Wow what a journey!!! I went to see the consultant at the Christie Clinic, by the way he is amazing – Dr Adrian Bloor – he saved my life – Twice! I was admitted on 29th `january as an emergency I had Kidney failure and the Myeloma was so aggressive. The doctor said it was wall to wall inside my body but he didn’t think my body would handle the treatment needed to save me, I was in the critical care unit for 4 days and the family were brought in basically to say goodbye to me. I was totally unaware of anything and no matter how hard I try I still cannot remember any of this time. I slowly responded to the chemotherapy and my kidney gradually repaired. After 8 weeks in the clinic I was allowed home for a weekend, I was so nervous but loved being with my husband and kids (& puppy) So here I am at home at the moment for 3 days but back in tomorrow for my 3rd course of chemo. Got to have another bone marrow extraction (I hate those with a passion – my toes curl just at the thought of it – lol) So I will keep you informed, sorry its been ages since I was last on here, I haven’t even had the strength to type!! But as they say onwards & upwards.. sending all my love and god luck to everyone – take care and stay strong!! Mandy

[sanParticipant]

Mandy, thank goodness for your Dr Bloor, he never gave up and neither did you!! so pleased for you and your family that you are at home today, and wishing lots of luck with your next course of chemo, do you know what he is giving you? you are a fighter, keep going, you are doing so well, lots of love to you Mandy, San XX

[rebeccaRParticipant]

Hi Mandy,
Glad to hear you are responding and putting up a championship fight. I have often thought of you and wondered what happened at your referral as you had really been through it then, let alone now. Keep it up Mandy – guess now you can say with authority that it can’t get any worse! Will they be looking at another SCT or allo donor for you as you have age on your side?
Stay strong
Rebecca

[eveParticipant]

Hi Mandy

When you go through all you have and survive it,it should give you a boost knowing that you can fight it,let’s hope the kidneys regenerate and slowly get you back on track.the whole thing is so emotional,once you realise how close things were.
I would not bother trying to remember about ITU,locally they will do a dairy if we asked,but I think it’s better that Slim cannot remember anything about that time,it also gives me some comfort that if it happened again!!! And the out come was not great,he would not know a lot about it.

Good luck Eve

[BADGERParticipant]

Hi Mandy

you have had a time of it lets hope now you can get better treatment at the new centre you are lucky to have a good one near
keep well love Jo
Hi eve how are you and slim is slim keeping ok my kidneys are rotten they have now fitted a fistula just in cse not what I wanted but hey ho
Love Jo x

[eveParticipant]

Hi Jo

Slim,s not to bad in the circumstances . He finishes his second Cycle of Velcade on Thursday this week,hid bloods are taking a battering,has had to have platelets every week,but not blood yet,he has managed to fight off an infection,so that has not helped, three years of Myeloma is the best lesson you can have to become an expert on your husband,

Mandy will learn a lot from her episode and it will be easy to recognise in future,I always go by blood pressure,as low blood pressure and high pulse rate show infection,even if temp does not spike.

Fistula,!!! What are your kidney readings!!!,let’s hope it does not come to that!!!!
Barbara is also having problems after kidney infection,but on the mend now. Love Eve

[BADGERParticipant]

Hi Eve

my kidney score creatinine 500 I was fine all the time I was on velcade as soon as I stopped the kidneys got worse they cannot explain it so they have put in a fistula dialysis access this has gone wrong and narrowed so they put balloons up the vein yesterday venoplasty full of bruises now
Regards to Slim
love Jo

[eveParticipant]

Hi Jo

You must feel that the Damascus Sword is dropping!!,all these new treatments effecting people in different ways!!,I think even the experts are on a big learning curve with us.

Sorry Mandy about taking your post but Jo does not post much for herself,you have to drag the news of her condition out of her,said in a nice way Jo!!!,please post more. love Eve

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