[ale2104pParticipant]

Hi Frances,

Welcome to the forum. It’s never a good time to welcome new member as it means another have our condition. But here you will find a network of patients and relatives and careers. I am pleased to hear that you are on track with your treatment and that SCT is on the cards.

Just as background: I was diagnosed in August, started treatment in September and next month will be having SCT. It’s been a roller coaster: nerves, emotions, pain feelings but now it’s time to look at the next phase.

As you have said, it is a journey and a marathon at that. I wish you all the best with your treatment.

[ale2104pParticipant]

Hello Sharon,

Sorry to hear what your brother is going through and I know how you must be feeling. It would be difficult for anyone here to diagnose myeloma or not. It is good that the various test are being carried out and soon you guys will get a definite answer. What I would like to add is that MM is a very individual condition and no two patients are the same.

Please take it one day at a time and continue to provide the support to you brother. When I was diagnose I had none of the typical symptoms. But since diagnosis I have found out that my potassium, calcium, magnesium are all low, plus I am hypertensive. Now I am fatigued, shortness of breath, slight decrease in mobility and so on.

I was only diagnose in the summer.

[ale2104pParticipant]

Hello Collin,

I fully understand the anxiety and apprehension you are feeling. Although the radio does look high, one of the things you will read or hear about is that MM is so individual that one person’s results should not to compared to another. When I started, I underwent MRI, CAT Scan, Bone Marrow, Bence Jones (yes all these test) to get properly diagnosed. I am a Light Chains patient (not paraprotein) and in the beginning (August 2018) it was 1122mg/l. After initial treatment we got it down to 116mg/l. The thing to look out for with light chains is the ratio.

Good that you are having the bone marrow soon. One step at a time, and you will find a rich source of information and helpful support here.

Have a good weekend.

[ale2104pParticipant]

Hi Cat,

I think it’s the same as everyone else have said. This is a forum that nobody really want to be in but unfortunately this condition brings us together.

I am in my mid 50’s and was diagnosed in August 2018. I at almost at the end of 6 months (6 cycles) of chemotherapy and hopefully I will do a Stem Cell Transplant in March. In the beginning the treatment was “painful”. The main thing was fatigued and shortness of breath. I also had easily signs of peripheral neuropathy and in the first week of chemo I developed a high temperature and had to be hospitalised for a week.

I started of VTD (2 cycles) and moved to KRD (4 cycles).

This forum is good for sharing and even if its just browsing – you will find some comfort here.

I don’t even take it one day at a time – I take it one moment at a time.

[ale2104pParticipant]

Hello Alison,

I don’t have anything different to add except to say that your haematologist will be able to tell if you have MM or not. Generally a bone marrow biopsy and MRI/CT/PET scan will also be done. I was diagnosed in August last year and started treatment in September. It’s been a challenging 6 months to say the least but I am at ease with myself now. Personally it’s harder for my family as I just do whatever my consultant says. I should be moving to Stem Cell Transplant in March.

I wish you all the best with your diagnosis.

[ale2104pParticipant]

Thanks Maggie and Tom,

Your feedback and encouragement keeps me going and looking towards the future. I can’t wait for my next trip back home as soon as SCT is over.

Have a great weekend all.

[ale2104pParticipant]

Dear All,
This thread of messages has given me so much hope to look forward to the future. Thanks very much.

Just a little about me: I am a newbie as I was only diagnosed in August and started chemo in September. I started on VTD but after 2 cycles, we had to stop and moved to KRD. I am now on my 4th cycle and if everything goes to plan will have ASCT around end of March/April.

Maggiemay: I hope your enjoy your CARIBBEAN trip – I am from the Caribbean myself! I have been trying to plan a trip to go home but find that medical insurance is so expensive. If you don’t mind – who did you get to cover you (if you took cover)?

Greetings Leza, Tom and lets continue to do like Tom says “onwards and upwards”. Personally I live it moment by moment.

[ale2104pParticipant]

Pb42,

First thing I would say is try as best as you can to stay positive.Emotional, psychological, mental strength is what you need at this time. Take it one day at a time and try not to read too many thing as I am certain you will find supporting and at teh same time contradictory information. If you want to read – read from this site.

I was recently diagnosed and still going through induction treatment and although I love to do reasearch I now only read things on a needs be basis. So for example – I have not read all the side effects of the medical regime which I am on – but when something comes along, then I will read up on it. a simple thing like itching – I only read about it when after about three days I itched like hell.

Yes! It’s quite normal to have MRI, CTCSAN, PETSCAN and XRay, each take images of a slightly different nature. Don’t worry about them too much

[ale2104pParticipant]

I signed up over the weekend and would like to encourage others to do the same. A very worthy resource

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