Hi Helen

That’s really good news you have only experienced only a small reaction to your first infusion of Daratumumab and your second infusion wasn’t so bad. It’s always worrying when you start a new treatment because you haven’t a clue as to how your body will react to the drugs and you have to wait for the first few sets of blood tests for…[Read more]

Hi,

I am sorry to read about your side effects to the chemotherapy, which unfortunately can seem to take over your daily life and interfere with daily activities. You might find the next few cycles get easier or they could get progressively more difficult. For this reason, I would suggest you keep a weekly diary and write down the days you don’t…[Read more]

Hi Susie, I used to have blood tests once every week for the twice weekly Velcade injections. The blood tests are usually carried out at hospital on the chemo ward just 5 minutes prior to the injection to ensure your levels are all to go ahead with the Velcade injection. All the best. Jan

Hi Andy

You’ve done so well on 40 cycles of Pomalidomide which has managed to keep your myeloma under control. I hope the MUK8 trial works just as well for you, with minimal side effects. It’s certainly discouraging news this week that Daratumumab hasn’t been approved by NICE, especially after it was fast tracked in Europe. It’s so frustrating…[Read more]

Hi Brian

It’s so good to see you are coping well with VTD and excellent news that your myeloma light chains have significantly reduced. You must be pleased with the results so far.

Your pins and needles are more than likely to be the start of peripheral neuropathy (PN) as a side effect to Velcade and Thalidomide, which you need to discuss with…[Read more]

Hi Jason,

Because we all react so differently to the various drugs, it is very difficult to predict the actual length of your treatment period or the specific number of treatment cycles you will have to undertake. It all depends on how well you respond to the chemotherapy and your tolerability to the drugs.

My first treatment in 2010 consisted…[Read more]

Hi,

I had my first Sct in August 2010 after four cycles of cyclophosphamide, dexamethasone and thalidomide (Cdt) which gave me a good five years of drug free remission until my first relapse in the autumn of 2015, when I completed 8 cycles of velcade, dexamethasone and cyclophosphamide (Vcd) followed by a second Sct in September 2016.…[Read more]

Hi Susie

If you have a look at the Myeloma News section on this site, there’s an article released on the 23 November 2015 stating Imnovid (Pomalidomide) is now available for myeloma patients in England who have received at least three prior treatments including Velcade and Revlimid, and whose myeloma progressed while taking their last treatment.…[Read more]

Hi Chris,

I’m sorry to read that you are having to start treatment again after your recent SCT. You’re certainly not expecting too much as regards remission time, because when we all go through treatment we always hope for as long a period as possible before the myeloma becomes active again. Unfortunately the amount of time we remain in…[Read more]

Hi Ian

Great news about your progress during your VDT and sct, especially as your side effects appeared minimal. Hopefully your myeloma levels are also good? You sound as though you are recovering well to be undertaking mile walks.

I remember my first infusion of Zometa causing me flu like symptoms with aching bones, but these side effects…[Read more]

Hi Brian and Peter

Brian: Your myeloma levels have certainly reduced significantly following your treatment. You must be so relieved and hopefully they continue to improve in the coming months. My lambda levels were 1900 at the start of VCD in Oct 2015 (all other levels normal) reducing after 8 cycles to the achieved 90% reduction target to…[Read more]

Hi Louishenry

Many thanks for your reply. I”ll certainly discuss again with my Maxillofacial doctor about shaving off the exposed bone growth, but it might have to wait some months to see whether my current bone growth stops, which will also give my immunity levels chance to improve after my recent second sct.

Jan

Hello Louishenry,

I found your post to be very interesting due to the similarities which I am facing with exposed bone growth in my mouth due to Zometa. My maxillofacial consultant is reluctant to remove my exposed bone whilst it is causing no problems, because he feels the bone might be still growing and therefore he would rather wait and…[Read more]

Hi Brian, Peter and Adrian

I completely agree that the side effects of treatment vary depending on the drugs used and everyone reacts in different ways. We all have to individually decide on the best way forward after taking into account all of the available advice and information which we require to make a decision. As you state Brian, it’s a…[Read more]

Hi Sonia

I’m sorry to hear about your husband’s experience with the Maxillofacial clinic and having to wait three months for NHS funding. Hopefully all of his dental work has been successful and he continues to be pain free without any further dental problems.

I’m not sure whether Pamidronate is any different to Zometa as regards the side…[Read more]

Hi Brian

Since it’s been a little while since your posts, therefore I’m not sure whether you have since changed your treatment to Vtd or whether you have made a decision about a sct.

I was diagnosed in 2010 aged 53 and went through 4 cycles of cdt followed by a sct. I didn’t question the treatment plan, because I found the diagnosis as a…[Read more]

After a successful sct in 2010, I started on monthly zometa a year afterwards and was still on the drug in 2015 when I found a small hard lump under my upper palette. The dentist suspected a floating piece of tooth, but a scan revealed a bone growth underneath the palette skin alongside two of my upper molars. Zometa was thought to be the cause…[Read more]

Hi Chris, I’ve recently completed the max 8 cycles of VCD followed by my second sct in September 2016. I tolerated the Velcade well. My nausea seems linked to cyclophosphamide rather than velcade. However I did suffer peripheral neuropathy in both of my feet and legs after cycle one, therefore the doseage of velcade was reduced slightly from…[Read more]

Hi Andy

I thought your newspaper article was good and certainly helped raise awareness of myeloma. I hope your recent operations on your head have managed to remove the necessary suspicious areas and that your scalp has recovered well. Have all your results come back OK? You were on my mind when my 97 year old dad spent three hours last week at…[Read more]

Hi Helen,
It’s so good to hear from you and read that your myeloma is still under control with your current drug regime. Long may this continue. With yours and Andy’s good experiences of pomalidomide, I was really pleased to learn the drug has now been approved by NICE. It seemed so unfair that it was available in Wales and Scotland but not…[Read more]