[cmpuloParticipant]

Hi! My name is Carmen and I am new here. I am originally from Malta but residing in UAE. I am 47 years old with two kids. This is my story so far.

I am not one to idle and usually keep myself active all the time. My overall health is good considering my ever increasing weight. Every year I do all my checks with all d frills and extras and everything has been perfect. In fact the last full blood tests were in late March and all was spot on mid brackets.
On the 25/06 we had an emergency in our apartment…practically hell broke loose. A hot water pipe burst in d kitchen and the place was getting flooded in a very quick way. My husband, my daughter and myself all slipped but I landed badly on my left arm and thought I broke it. I managed to get up and away from the scalding water and an ambulance arrived soon after. That day was spent in ER. From a broken arm to a dislocated to Madame you need an MRI. Nothing was making sense but I was in so much pain I just went with flow. At 23.00 I was dismissed with an injection as pain relief and an urgent apt with an orthopedic surgeon on the following Saturday. The diagnosis a 9cm lytic lesion myeloma cancer or metastasis. Blood works were ordered and a 24 urine test. Blood results all perfect but a substantial increase in protein in the urine. Other tests FISH all negative…a slight M Spike…bone marrow <10%…bone biopsy activity in the myeloid and erythroid series (I’m sorry whatever that is no medical background). Pet Scan total of four lesions. I ask myself now how come I never felt anything! Since, I’ve had a nail inserted in my arm and slowly gaining mobility and strength back. I went without cast for five long weeks worried that d fracture in my lesion would break my Humerus. Today four weeks on I started my second chemo cycle. It hasn’t been too bad apart from when I got my first Zometa injection. I thought I was dying with pain and wanted to die anyways. That pain and the chills and the fever subsided on day three. My biggest issue right now is the red/purplish spots on my tummy due to Velkade. Extremely itchy and super uncomfortable! Anyone had the same effects? Oncologist today suggested to have two injections instead of a more concentrated one.

Also, I’m due a SCT but it is not available yet in all UAE neither in my home country Malta. Would anyone be kind enough to suggest a private Centre where I may have it in uk please? Especially in Scotland as my two children study there.

I’m suffering from anxiety spells and my moods are indescribable. I’m usually a jolly person but I’m slowly losing my way. I blame myself for everything that’s happening in my life. Maybe not taking care of myself more. I have the love and support of an incredible husband but no siblings or parents. Father died of lymphoma when I was 9 years old. He was young. Mother of a brain aneurism. This is not my country but the care and support from the team is awesome…I’m also blessed with many caring friends. But reading and researching is making me very anxious and I can’t help it.

Today…this…was a way to share my story and my accidental MM finding. Thank you.

• This topic was modified 8 years, 4 months ago by  cmpulo.
• This topic was modified 8 years, 4 months ago by  cmpulo.

[deanParticipant]

Hi Carmen.

I know it’s hard, I’m still trying to get my head around it all still when I was diagnosed back in April. We can’t change it now, we have to deal with it unfortunately.. I’m 42 and half maltese. My mum who is also called Carmen lives in mgar… have they given you options to where you can have your Sct??? I did hear that Malta has a set up with Kings collage in london where I’m due to have my Sct soon. They also have accommodation near by for family.. this is what I was told from my mum in Malta who new some one in Malta who used kings but maybe the rules have changed now. Not sure if this helps?

[cmpuloParticipant]

Hello Dean
Thank you for your reply. I have heard great things about Kings College however to my knowledge all Maltese patients are treated in Royal Marsden. Since I do not live in Malta but still holding a Maltese passport that would be the most obvious option however I am receiving treatment in another country and I’m not sure I can go through that channel. So far most has been covered by a private insurance and I’m likely to get my SCT through it. Having said that my husband’s job is in jeapordy and that might change…so really I’m looking at all possible options.
How are you coping with your treatment? I feel my body changing mostly my skin…but really NOT looking forward for my next Zometa on Thursday next week…it really shook me! Good luck on your SCT…please let know how you get on.

• This reply was modified 8 years, 4 months ago by  cmpulo.
• This reply was modified 8 years, 4 months ago by  cmpulo.
• This reply was modified 8 years, 4 months ago by  cmpulo.

[deanParticipant]

Hi

Like you finding it tough.. more the worry etc as I have a young family.  Hopefully the stemcell transplant does the job for a while and get to family life with my girls.. fingers crossed.  I got to a bad start with chemo but got through it. Now not had any chemo for 3 weeks on a break until end of October then stemcel. Abit scared goung through it but needs to be done.. the velcade gave me a rush around the injection otherwise it was fine…does the zomta effect you? So far I’m ok with it….Good luck your end. If you ever want to chat by phone or email if it helps just let no. All the best

[cmpuloParticipant]

Hey

Zometa was an absolute B! It all started exactly 24 hrs after it was administered. Every single bit of bone in my body HURT…including teeth and eardrums! Unexplainable! Fever chills and hot flushes! But it eventually subsided. I’m preparing myself next time…firstly I know what I’ll be getting…but I will have some kind of pain killers from the night before or something! The pain was excruciating never anything like it…not even with two long deliveries! Been coping with chemo ok. I get two weeks of Revimid and a week break. Four cycles in total and then the SCT. I’m terrified of it! I just don’t know how it will all go….

You are a few years younger than me…it’s tough on your family and worse on yourself…but please make heart. I know easier said…like I mentioned I’m not looking forward to that part of the treatment and especially with having to travel from here and the difficulties that might arise from it. But we owe this to ourselves and hard as it is we deserve to be around for our family too! Sending an embrace…

• This reply was modified 8 years, 4 months ago by  cmpulo.
• This reply was modified 8 years, 4 months ago by  cmpulo.
• This reply was modified 8 years, 4 months ago by  cmpulo.

[avantrompParticipant]

Hallo
I spotted this mail on a thread in Myeloma Beacon. “Re: Fever after Zometa infusion – is it serious?”
You might find it helpful.
Annette

Re: Fever after Zometa infusion – is it serious?
by chadsnow on Thu Sep 08, 2016 4:56 am

Too late to help the original poster, but anyone who reads this later may be helped by this advice. I had a horrible reaction to the first dose of Zometa – ended up in the hospital for two days with high fever and severe bone pain. My chemo nurse recommended I take a Motrin (ibuprofen) and a Claritin (loratadine) the day before, the day of, and the day after my Zometa infusion, and it has worked like a charm the last 4 times. Apparently, something in the antihistamine in Claritin reduces the side effects of the Zometa.

Talk to your doctor about it. It worked wonders for me.

chadsnow
Name: Chad Snow
Who do you know with myeloma?: myself
When were you/they diagnosed?: May 19, 2016
Age at diagnosis: 45

[Author]

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