12 Years Cancer Free :)
Hi Lovely Pink Ladies. Thank you for reading my post today!!! Well, I am now officially 12 years cancer free in late August 2023 but I have had a few scares along the way as we all expect may hap...
Forum Discussion
Hi arpie.
Thank you for your lovely response to my fun filled ongoing existence. ;)
So sorry to hear about your arthritis issues, that can be so debilitating at times right? :'(
I have had Polymyalgia Rheumatica since October 2006 and the CRP levels get checked quite often. I have had private Rheumy doctors in the past and are now in the same public hospital that saved my life, and I went through cancer treatment in also.
They consider 80 high on an ANA Titre reading I have been as high as 2560. Although the Rheumy doctor told me you can have high readings with this but be nothing, and having an autoimmune disease can be a coincidence. I found out a very long time ago that the medical field is not an exact science and it is 'hit and miss' at times. Something else that is interesting is that my ANA went down to 1280 at times and for no apparent reason too. Aren't we just the most complex of any species on the planet? :D
However during breast cancer treatment my pain level was remarkably low and quite tolerable. The Rheumy doctor at the time told me it would be a 'double edged sword' and he was right. My Oncologist said to me it would be a 'fine balancing act', which it most certainly was too. Only very recently my Rheumy doctor put me on a drug called Pyralin EN 500. I had told the Rheumy doc that I had been having flares again and had gone up on my meds to cope. It was supposed to be 2 per day with 5mg of Prednisone, but in light of my high response to meds she told me to take 1 per day. Unfortunately I passed out on this drug and only lasted 6 days on it. I could not function in the day, especially trying to drive. So again I cannot tolerate anything other than Prednisone. I am currently on 5mg/day. When I first had my disease in 2006 the doc put me on 40mg/day to get the inflammation under control. Thank goodness that is not the case now as that drug isn't good long term. And 30 days is considered long term right? :D And on high doses having a blood test causes incredible bruising and infections. And having had 3 lymph nodes removed in 2011 means bloods and pressures can only be done on my right arm. Poor thing cops a beating at times.
I have also tried Methatrexate and Plaquinal which were not successful in any form for me. One gave me extreme nausea the other horrible nightmares bordering on night terrors! The gp told me I would have the disease for 6 month to 6 years in 2007 and now it will be 17 years next month. I just wish that was accurate. He tried Immunoglobulin injections twice but to no avail also. That journey was also quite harrowing, at least when you have a diagnosis you can start to move forward with treatment etc. The gp had me constantly getting blood tests. Testing for anything for LUPUS to Lymes Disease and Ross River Fever as I had extreme pain but also fatigue and brain fog. This PMR is a constant drama for me. A muscle wasting disease for no apparent reason, and it took forever to diagnose initially. My gp told me to call it 'Mia's Disease" lol. Then 2+ years ago I was diagnosed with Coeliac disease via bloods then an Endoscopy last year in August 2022. That isn't pleasant either as dietary limitations is quite a burden along with cross contamination worries and iron deficiency . I have been 'Glutened' on quite a lot of occasions too. Now with the PET they have found Diverticular Disease. Gotta love life right? :'(
Gp always said to me to not be surprised if after having one autoimmune disease I don't get another one on top of it, or even more. Wow!!! Just wish winning the lotto was as easy? :)
My private Rheumy doctor told me that they were happy for me to be on Prednisone the rest of my life if necessary, but I am not, and hence why I went to the hospital some years ago. There are more drugs I can try and then the Biologicals. They are extremely expensive at around $10 000.00/month. I wouldn't pay that of course as the government does subsidise them. The Rheumy doctor says differently to the gp however so who knows what will eventuate there?
I did have COVID last November and have been told you can have nodes enlarge with it, and that it can last 43 weeks or so? They really don't know and will continue to monitor me at least so that is good.
Well I just have to be patient I guess and hope it finally decides to behave itself and I can stop taking Prednisone with my PMR too. To have a normal life would be such a welcome change.
I also had stress testing done 2 years ago with high cholesterol levels and they found I have a genetic heart condition. Would you even make a movie about me? Lol!!! Another slap in the face. It was picked up going through chemo but I wasn't told at the time. I only found that out when my gp checked my file for me upon asking why testing done then didn't show that. I guess they thought I had enough to worry about at the time but I still feel I should have been told.
I am also waiting on an appointment for genetic testing. I had it done in 2012 after I had finished my 6 chemo and 29 radiotherapy sessions at the hospital. With my last scare the specialist asked me if I would be interested in another genetic test as they can test more of the genes now than in 2012. I said definitely I would be interested in that. I have filled out the questionnaire already and now just waiting for the appointment. Initial testing found that my Breast Cancer wasn't genetic but there were only 3 genes they could test back then.
This continual looking over my shoulder is so stressful at times and I get quite teary and emotional from it. Out of the blue I just burst into tears and feel depressed. Especially when I get a memory or see about someone else's journey similar to mine. I know, I should be thankful that we live in an age where positive treatments are available for most things on a medical basis, but it is still taxing.
I have had some people tell me look forward not backwards, and I tell them that when I have a scare I can't do that easily and unless you have been through it you don't know the half of it.
Now a very dear friend of mine has just been diagnosed with breast cancer and she also has something going on with her thyroid too. :'( It brought back so much for me. My poor friend though has already had bowel cancer in 2011 around the time I was going through BC, so this is so unfair. And it has been a year since I lost another dear friend who also had BC same year as me but we did not know each other at the time. It has been a year last month since I lost her after a 4 year battle again only this time it was terminal. This too makes for a very emotional time for me. I am trying to support my friend who is currently going through it by chatting with her when she is up to it.
I so admire her as recently they sold their house and are building a new one all while going through chemo and then onto radiotherapy. I so feel for her and admire her strength. We have to be strong and courageous too even when inside we may feel broken.
Thank you again for responding to me, I so appreciate the information and support.
Sending hugs.
Take care of yourself and stay strong for your journey. XXX
Thank you for your lovely response to my fun filled ongoing existence. ;)
So sorry to hear about your arthritis issues, that can be so debilitating at times right? :'(
I have had Polymyalgia Rheumatica since October 2006 and the CRP levels get checked quite often. I have had private Rheumy doctors in the past and are now in the same public hospital that saved my life, and I went through cancer treatment in also.
They consider 80 high on an ANA Titre reading I have been as high as 2560. Although the Rheumy doctor told me you can have high readings with this but be nothing, and having an autoimmune disease can be a coincidence. I found out a very long time ago that the medical field is not an exact science and it is 'hit and miss' at times. Something else that is interesting is that my ANA went down to 1280 at times and for no apparent reason too. Aren't we just the most complex of any species on the planet? :D
However during breast cancer treatment my pain level was remarkably low and quite tolerable. The Rheumy doctor at the time told me it would be a 'double edged sword' and he was right. My Oncologist said to me it would be a 'fine balancing act', which it most certainly was too. Only very recently my Rheumy doctor put me on a drug called Pyralin EN 500. I had told the Rheumy doc that I had been having flares again and had gone up on my meds to cope. It was supposed to be 2 per day with 5mg of Prednisone, but in light of my high response to meds she told me to take 1 per day. Unfortunately I passed out on this drug and only lasted 6 days on it. I could not function in the day, especially trying to drive. So again I cannot tolerate anything other than Prednisone. I am currently on 5mg/day. When I first had my disease in 2006 the doc put me on 40mg/day to get the inflammation under control. Thank goodness that is not the case now as that drug isn't good long term. And 30 days is considered long term right? :D And on high doses having a blood test causes incredible bruising and infections. And having had 3 lymph nodes removed in 2011 means bloods and pressures can only be done on my right arm. Poor thing cops a beating at times.
I have also tried Methatrexate and Plaquinal which were not successful in any form for me. One gave me extreme nausea the other horrible nightmares bordering on night terrors! The gp told me I would have the disease for 6 month to 6 years in 2007 and now it will be 17 years next month. I just wish that was accurate. He tried Immunoglobulin injections twice but to no avail also. That journey was also quite harrowing, at least when you have a diagnosis you can start to move forward with treatment etc. The gp had me constantly getting blood tests. Testing for anything for LUPUS to Lymes Disease and Ross River Fever as I had extreme pain but also fatigue and brain fog. This PMR is a constant drama for me. A muscle wasting disease for no apparent reason, and it took forever to diagnose initially. My gp told me to call it 'Mia's Disease" lol. Then 2+ years ago I was diagnosed with Coeliac disease via bloods then an Endoscopy last year in August 2022. That isn't pleasant either as dietary limitations is quite a burden along with cross contamination worries and iron deficiency . I have been 'Glutened' on quite a lot of occasions too. Now with the PET they have found Diverticular Disease. Gotta love life right? :'(
Gp always said to me to not be surprised if after having one autoimmune disease I don't get another one on top of it, or even more. Wow!!! Just wish winning the lotto was as easy? :)
My private Rheumy doctor told me that they were happy for me to be on Prednisone the rest of my life if necessary, but I am not, and hence why I went to the hospital some years ago. There are more drugs I can try and then the Biologicals. They are extremely expensive at around $10 000.00/month. I wouldn't pay that of course as the government does subsidise them. The Rheumy doctor says differently to the gp however so who knows what will eventuate there?
I did have COVID last November and have been told you can have nodes enlarge with it, and that it can last 43 weeks or so? They really don't know and will continue to monitor me at least so that is good.
Well I just have to be patient I guess and hope it finally decides to behave itself and I can stop taking Prednisone with my PMR too. To have a normal life would be such a welcome change.
I also had stress testing done 2 years ago with high cholesterol levels and they found I have a genetic heart condition. Would you even make a movie about me? Lol!!! Another slap in the face. It was picked up going through chemo but I wasn't told at the time. I only found that out when my gp checked my file for me upon asking why testing done then didn't show that. I guess they thought I had enough to worry about at the time but I still feel I should have been told.
I am also waiting on an appointment for genetic testing. I had it done in 2012 after I had finished my 6 chemo and 29 radiotherapy sessions at the hospital. With my last scare the specialist asked me if I would be interested in another genetic test as they can test more of the genes now than in 2012. I said definitely I would be interested in that. I have filled out the questionnaire already and now just waiting for the appointment. Initial testing found that my Breast Cancer wasn't genetic but there were only 3 genes they could test back then.
This continual looking over my shoulder is so stressful at times and I get quite teary and emotional from it. Out of the blue I just burst into tears and feel depressed. Especially when I get a memory or see about someone else's journey similar to mine. I know, I should be thankful that we live in an age where positive treatments are available for most things on a medical basis, but it is still taxing.
I have had some people tell me look forward not backwards, and I tell them that when I have a scare I can't do that easily and unless you have been through it you don't know the half of it.
Now a very dear friend of mine has just been diagnosed with breast cancer and she also has something going on with her thyroid too. :'( It brought back so much for me. My poor friend though has already had bowel cancer in 2011 around the time I was going through BC, so this is so unfair. And it has been a year since I lost another dear friend who also had BC same year as me but we did not know each other at the time. It has been a year last month since I lost her after a 4 year battle again only this time it was terminal. This too makes for a very emotional time for me. I am trying to support my friend who is currently going through it by chatting with her when she is up to it.
I so admire her as recently they sold their house and are building a new one all while going through chemo and then onto radiotherapy. I so feel for her and admire her strength. We have to be strong and courageous too even when inside we may feel broken.
Thank you again for responding to me, I so appreciate the information and support.
Sending hugs.
Take care of yourself and stay strong for your journey. XXX