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 time a day. For other times she wears head scarves and beanies. When she just got her wig, she took it to a hairdresser to trim and make it suit her face. It also requires care, e.g. washing with shampoo and it needs to be kept in shape on a mannequin or a large jar.
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 life. The advantage of being diagnosed at this early stage is that you will be monitored closely and it would allow the doctors to start treatment as soon as necessary and prevent the disease causing serious damage to your bones, kidneys, etc. Myeloma is currently not curable, but it is treatable. This means it is important to plan treatment keeping in mind future relapses. There are many good drugs available now to keep myeloma at bay. However, eventually a drug may stop working for you and a new treatment may be required. The strategy is then to prolong the periods when your MM will respond to a drug. Logically, starting treatment when you become symptomatic leaves more drug options for the future. I hope it makes sense.
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 are switched off, the better overall and progression-free survival will be. Unfortunately, in the UK they still have it all in reverse and new drugs can only be accessed by people who already have been heavily pre-treated and whose MM is now very advanced and resistant to treatment. Then it is easy to say that the drugs are not as effective as one would wish them to be. Money can be saved considerably, if fewer people have early or frequent relapses due to smart use of novel drugs from the onset.
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 electrophoresis), Immunofixation electrophoresis (IFE; also called immunoelectrophoresis) and serum free light chain (FLC) assay. Sometimes also urine tests (again, for specific markers). This may be followed by bone marrow aspiration and/or biopsy and imaging to see any bone or oft tissue involvement.”</span>
Is your mum does not have an M-spike and her proteins are at normal ranges, what makes you think she is stage 1, or that it is MM at all?
There is such a notion as CRAB criteria, and at least one of those has to be present to start treatment for MM. They are: hyperCalcemia, Renal dysfunction, Anemia and Bone lesions. Your mum has anemia, but anemia can be caused by a variety of reasons. I believe more tests are need to confirm the diagnosis of myeloma and the stage of the disease (e.g. check renal function and see if bone lesions are present).
I know it is difficult to stay calm in this situation. I agree that the waiting times are now completely unacceptable and people suffer and their condition deteriorates often to dangerous levels. I feel very sorry for your mum. She did not have to suffer so much. I also do not understand why they would not operate. People with MM have surgery often. It is the nature of the disease to have bone issues and fractures, so spinal surgery is a common thing with MM patients. I hope they investigate and treat MM if necessary to bring it to a stable level when the surgery can go ahead. It is also possible that it is not MM.
Thinking of you and your mum.
Mike, I wrote my comment and then saw that you had already commented within the same lines đŸ™‚ 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 you and your daughter did – you knew what to ask for and you expressed your needs clearly. Even if it turn out to be unrelated to myeloma at lest you would have checked. It is important to be vigilant and thorough with a tricky illness like this.
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 treatment works the life can be extended for months, maybe years. My sister has been denied Darzalex recently because of the cost, not for any clinical reason, as her doctors all agree that this is what she now needs. It makes me very angry and scared.
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 of functioning. If he is not fit and his functioning is seriously impaired that the risk would be in him surviving the transplantation. This is something to keep in mind. Allo transplant is a high risk procedure, but it also gives the best change of longer progression-free survival.
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 regimen to tackle this. Non-secretory myeloma requires bone marrow biopsy and MRI/PET imaging to monitor. In myeloma patients any bone pain needs to be thoroughly investigated. I hope you got the care you needed.
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: initial; background-attachment: initial; background-origin: initial; background-clip: initial; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline; color: #3c3c3c; font-family: Arial, Helvetica, sans-serif; font-size: 15px;”>Serum protein electrophoresis), <strong style=”background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline; color: #3c3c3c; font-family: Arial, Helvetica, sans-serif; font-size: 15px;”>Immunofixation electrophoresis (IFE; also called immunoelectrophoresis), <strong style=”background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline; color: #3c3c3c; font-family: Arial, Helvetica, sans-serif; font-size: 15px;”>serum free light chain (FLC) assay. Sometimes also urine tests (again, for specific markers). This may be followed by bone marrow aspiration and/or biopsy and imaging to see any bone or oft tissue involvement.
What I am trying to say, it is too early in your mum’s case to categorically say one way or another. It must be a very difficult time with a lot of uncertainty for your family. I hope your mum get the right diagnosis soon and receives a treatment that would make her better.
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 continue with treatments. Interestingly, she does not come up with alarmingly frequent infections, though she does take precautions when her WBC are critically low. We are talking below 1. Her new normal is 2.5-2.6.
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!
