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]

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 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]

Hi Maureen,

Hope your trip to Copenhagen went well. My son quickly recovered from his tonsillitis op with only a minor scare with some bleeding when the scabs started to come off. You tend to forget how quickly you recover when you are younger. He managed to sell his England football tickets within hours on the B’ham City football site and…[Read more]

Hi, Since being diagnosed with myeloma 2010 following three collapsed vertebrae, I find that I suffer with terrific pain in the top part of my shoulders and back. I’m on pain patches and tablets to help. But, I did find the shoulder pain greatly intensified when I was sitting around in a chair for hours, or propped up in bed whilst recovering for…[Read more]

Hi, I know how you are feeling with the peripheral neuropathy. It’s definitely diccult to cope with. I began to have slight tingling in my feet after the first week of Velcade, which gradually got worse by the end of cycle one. The volume of my Velcade was reduced in cycles 2 to 6, but the tingling changed to numbness and pain in my lower legs.…[Read more]

Hi Maureen

Hope all your bags are packed and ready for your wonderful break in Copenhagen. Our youngest son is at home following his tonsillitis operation last Friday. He is coping well, but apparently the time for infections or bleeding is five to seven days after the operation. After much discussion, he has only just reluctantly accepted that…[Read more]

Hi Maureen

To be able to celebrate Ian’s 60th birthday in style with friends and family, must be so rewarding and enjoyable, especially after his recent set of good blood test results. Long may his remission continue, particularly after his tough time during treatment. I hope you both have a wonderful time in Copenhagen, as well as your holiday…[Read more]

Hi Les,

I’m so glad that your time in hospital went smoothly, if probably slowly due to your boredom. It’s such a good feeling when you come out of your isolation room and go home to your own house/bed.

You ask what comes next. You should have a follow up hospital appointment to see a doctor quite soon, which will monitor your latest blood…[Read more]

Hi,

So sorry to hear about your Mom, but as you say she was very fortunate not to suffer with any myeloma symptoms or bone pain and was able to continue with her daily life at home for a great period of nine years.

I don’t envy you having to clear your mom’s property with all of her personal effects. It’s such an emotional and stressful time…[Read more]