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]

Donna I was shocked and saddened to read about your mum Gill. She was truly a lovely, sympathetic women who was alway supportive. I Loved to read about trips to France and the dogs. I always remember Gill replying to a post on advice for travel advice and she answered “Stephen says he’s not going to wake up in the morning with an acute case of…[Read more]

Hi,

I’ve been on Zometa for five years without any side effects and actually have reduced back/rib pain from the drug.

After relapsing in Oct 2015, I commenced VCD for eight cycles and in April 2016 I noticed a possible ulcer in my upper palette. After visiting the dentist, it appears I have some bone or tooth growth erupting through the…[Read more]

Hi!! Am back! It’s coming up to two years now since Slm died,had lots of adventures,but would have liked to do far more!!!

I decide to come back and tell you,why you should grab life by the throat and enjoy evey minute you have,I will not be replying to any answers,!!

I was diagnosed with Bladder Cancer in June of this year,although it’s very…[Read more]

Hi Linda

It’s good to read you have been having bone strengthening infusions for the last eight years, which have also helped to maintain your myeloma levels. I hope your levels remain low for a long time to come.

The extra bone in my upper pallet might be tooth rather than bone growth. However the amount of bone/tooth being exposed is slowly…[Read more]

Hi, You are right, there are so many different treatments available for myeloma which is good news but can be confusing. If you have a look at the information on this site, there are some useful fact sheets available about what each specific treatment involves. Probably a better suggestion would be for you to speak to the myeloma nurses from…[Read more]

Hi

You have both certainly been through a lot over the past 14 years. I think it’s terrific news that your husband gained 14 years of remission from his transplant, but can totally understand your shock when the cancer has returned especially when you thought the cancer was curable. I would suggest you find a specialist myeloma consultant to…[Read more]

Hi, I’m really sorry to hear that your husband’s kidney functions are out of range and as a result Zometa has been stopped. You always will be concerned when you have to stop taking a drug which provides bone strengthening benefits and possible anti myeloma properties, but it’s important your husband’s kidney functions are working within range.

I…[Read more]

Hi Jan

In addition to the useful information on this site, there’s also some interesting forum posts on The Myeloma Beacon website where individual myeloma patients have outlined their personal sct experiences.

Depending on your hospital’s policy on sct procedures, you might find some minor differences such as: * The high dose chemo of…[Read more]

Hi, That’s good news about your husband trying a different pain medication. Let’s hope it helps with making the pain more tolerable. There’s nothing worse than constant pain. Don’t forget to discuss the matter with your consultant, because your husband might need another MRI scan to ensure there is no further bone damage. I would also ask your…[Read more]

Hi,

It’s worth mentioning the pain to your consultant in order to ensure there is no further lesions or fractures. Perhaps pain medication is necessary for a period of time to help relieve the pain. However, it might just take a little while to improve especially after what your husband’s body has been through during the sct process.

After…[Read more]

Hi Andy

Hope you have a great, relaxing time. The sunshine will certainly boost your vitamin D levels. Hopefully your current treatment will still be able to contain your myeloma levels.

Jan

Hi Maureen,

I’ll be thinking of Ian on the 17 May at his next consultant’s visit, because my next visit is the 16 May. You always tend to worry a little before these visits whilst you wait for your myeloma levels. Hopefully Ian’s light chain levels will remain stable for a long time yet.

In preparation for my sct, I visited my dentist for a…[Read more]