Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi, diagnosed last Dec with pp 39, Xmas Eve showed pp 41, jan 28 it was pp 34 and May pp, 24. Is it normal for pp to drop without treatment? - was going through chemo for breast cancer Jan-May.
Really good to hear from you again and I hope you are doing ok?
I’m not sure there are many people here with two cancers, but hopefully someone will be along soon with some experience. What chemo did you have for BC? Sometimes, one of the drugs in the myeloma treatment regime is a generic one (ie, it can work in fighting several cancers). So it may be a drug you had for BC has also helped the myeloma too. This news is really positive as hopefully it will mean you will be really responsive when you get a Myeloma-specific drug. What is the plan of action for you now?
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thanks Greg, it was FEC t chemo.
What is the C, is it cyclophosphamide? If so, that drug is commonly prescribed in myeloma regimens, so it’s entirely possible this has been working its magic on the myeloma as well as the BC. This is really good news as if you are now going to add in a Myeloma specific drug (eg, velcade, revlamid, etc), it should be a good sign your body is going to knock the myeloma into remission. Is that the plan now, to add in some myeloma drugs, or are you having a break from treatment?
Hi, I have just checked and yes the C does stand fir cyclophisphamide. I think I'm a bit gutted to be honest! I changed my diet, I'm taking supplement as using 'off label' drugs, doxycycline mebendezol, atorvastatin and metformin. I have had no treatment for myeloma so far as dealing with chemo and radiotherapy. Be interesting to see what my pp is at next appointment in September. Part of me doesn't want to start treatment as feel I will be on a slippery slope! Also, I'm not keen to put my body through a second lot of chemo.
I had only had one cycle of chemo when my pp dropped from 41 to 34. Would the cyclophisphamide have worked that quickly?
Really sorry, it didn’t cross my mind that you were hoping the pp had gone down naturally. Please don’t take anything I say as the medical truth, I am very far from being a medical expert. What little I have learned over 4 years on this path is that there is still a lot to learn! Also, I have the light chain version of myeloma so my pp has never been particularly high. I do know that the drugs can have a good effect in a short space of time but that is by no means a guarantee of what has happened to you. Also, I do know pp can fluctuate naturally so the medical teams are much more interested in the overall trend rather than one isolated result.
It’s probably best to wait and see what the medical teams say in September. I can understand you wanting to be drug-free. It may be they will keep you on a watch and wait for the time being. If you do have to start treatment, please be assured that the treatment for myeloma can often be well tolerated and depending on the strategy, once you have been on treatment and knocked the myeloma cells down, you may go treatment free again - eg, I haven’t taken anything for myeloma for almost 4 years now.
Thank you Greg for reply. Im glad to hear you haven't had to have treatment for quite some time. I will update you after September appointment.
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