I have just spoken to my sister and she told me she regrets buying a natural hair wig. Like Rebecca says it is more difficult to take care of and some of my sister’s friends who have synthetic wigs look fab and natural in them. Modern synthetic wig can be really natural looking and easy to manage.

Hi, I cannot advise on where to buy, as my sister with myeloma lives in another country. But I can say that her wig looks beautiful and you would not know it is a wig. Having said that, she finds it very uncomfortable to wear it for more than just a couple of hours a day. It gets hot and itchy. So, she only wears it when going out and for limited…[Read more]

Hi, Linda

It sounds like you have been diagnosed with what is called “smoldering myeloma”. It means that your myeloma is not yet symptomatic. It is true that this stage is usually not treated, as there is no evidence that starting treatment at this stage extends overall or progression-free survival. Treatment, however, can reduce your quality of…[Read more]

Generally, the policies are very short-sighted. it has now been established that monoclonal antibody drugs, which Daratumubab is an example of, when used as a front-line therapy in combination with either Velcade, Revlimid or Dexamethasone have superior affect on the overall outcome, producing a deeper response upfront. The earlier MM processes…[Read more]

Sorry about the gibberish in my post. I think it was some weird technical glitch. In case you struggled to read it, here is what I wrote:

<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”>”One can suspect it, but specific tests need t be done, such as SPEP (Serum protein…[Read more]

Mike, I wrote my comment and then saw that you had already commented within the same lines 🙂 But maybe it’s a good thing and would draw attention to this issue, that is often overlooked by professionals who have not seen many cases of MM. So, we as patients have to advocate for ourselves and our loved ones.

Sheena, I am glad that this is what…[Read more]

I also signed the petition. It is astounding that the obvious and evidenced treatment options are denied, when they are life-saving! Darzalex is used in combination, I think, in all developed and some developing countries, except England. This is very sad. Also sad that people after four lines of treatment are virtually written off, though if the…[Read more]

Hi Emsie

I would not be able to comment on the particular genetic abnormalities, just I am surprised that high risk of myeloma is presented as contraindication for an allo transplant. It is the most aggressive treatment out there and high risk myeloma requires aggressive treatment. What would make sense is your husband’s general health and level…[Read more]

Hi Smilne

Glad to hear things worked out for your dad’s treatment. I hope it goes smoothly.

Sheena

Myeloma can become non-secretory over time, meaning that its markers may not be present in the blood. In my sister’s case, when she had her blood taken following renewed bone pain, the M-gradient was at zero. However, MRI showed new lesions in several locations, including soft tissue involvement. She is now undergoing an aggressive chemo…[Read more]

Hi Swandog

I m sorry to hear about your mum’s health troubles. As far as I understand, a definitive diagnosis of myeloma cannot be made from such general tests. One can suspect it, but specific tests need t be done, such as SPEP (<strong style=”background-image: initial; background-position: initial; background-size: initial; background-repeat:…[Read more]

Just noticed that you posted quite some time ago. How’s your dad doing?

Hi Serena

My sister has had low WBC counts long before she was diagnosed. The treatments drive those down to seriously low levels. She does have to do Neupogen shots on a regular basis between and especially prior to pretty much every round of treatment and she has had a lot of rounds. Obviously, it is not ideal, but this is the only way to…[Read more]

Thank you, Paula. I have applied to join the group on Facebook.

Hi Gerry

What petition is that? I would like to sign it also. How can I access it?

Thank you!