Hi Catty, Just read through all the posts and all of the advice sounds good (such a great discussion group for us cancer sufferers, sorry it was not around years ago), well I am a bit like Budgie, I have had cancer(s) over the past 18 years and had two terminal diagnosis (from different cancers), had truckloads of medications, chemo's and tests mixed into that a couple of surgeries (cancer related) and just like Budgie 'I am still here' 3yrs and 10 mths since my last encounter.   I actually take no medications relating to any of the cancers, a couple of heart tablets and Endep (for neuralgia).   Do I have problems, yep sure do, I am still plagued with dizziness, fatigue and a bunch of what I think is minor stuff all thing being considered, it all messed with my head for a long time and I still use phycologists as the need arises.   You have had some really good advice (from this site) and its not all doom and gloom, sure it can be tough and very difficult to cope with day after day but rely on your doctors (some of the best in the world), you have wonderful support from your mum and that is fantastic. As I usually say 'go forward, meet it head on, all the treatment, test etc.' you can't change what is happening anyway.   I hope all goes well in this new round, yeah I know it sounds like a boxing match but if you get knocked down make every effort get back up again.   Kindest regards Colin ... View more

Hi Freelancer, Not sure if this any help at all but just over 3 years ago I had bone marrow stem cell transplant which consisted of several months in hospital and many, many visits (and stays) in hospital and visiting all the various specialists associated with this procedure. During my recovery process I was given an oral medication (I really can't remember its name) I started taking it as recommended and in the space of a week or so I was totally deaf. Back to the Dr's and yes he confirmed that this is one of known side effects and that it was probably permanent (shouldn't I have known??) anyway my GP believed that my hearing would recover in time as I was taken straight of the medication. In order for me to go back to work I was fitted with some (very expensive hearing aids) and that seemed to be the end of it. Three plus years on my hearing has essentially returned (not fully) and I have newer better hearing aids as I still have a level of hearing loss, which is probably age related, still have the tinnitus which wasn't there previously.   I hope you are still okay and stay that way.   Colin ... View more

Hi Dianna58, Glad to hear that your treatment is progressing, chemo's not much fun but sooner you start the sooner you will finish. I found that the first few doses were not to bad but 4,5 or 6 were tougher, don't give up.   I had all my treatments through the public health system and essentially it was free of charges although it sometimes did cost for medicines dependent on what they were and where they were bought. It did cost me 'several hundred thousand' in lost income for all the time off work but the enormous amount of tests and confinements in hospital over the years did not. If I had had to pay for all treatments (the chemotherapy is the price of a small car) I certainly would not be hear now.   You should talk to your GP or the social services at the hospital for any assistance that may be available to you, not just money but actual help in transport, accommodation and  other things, I used the accommodation at Concord several times (at a nominal fee) and I know there is some out of  Westmead as well, many services are available, but you should ask. It is going to be hard enough doing chemo and could lighten the load somewhat with extra help.   We are all with you on this.   Colin   Be positive, go forward, face all these trials head on. ... View more

Hi Madsnhunt, I'm sorry to hear about your diagnosis, living regionally must make it very difficult for you and your loved ones, I have always lived in Sydney near to the clinicians and hospitals and it was difficult enough for me.   I had a different experience but went through the the thought processes you are having now. My wife and I put into place a lot of the things needed for when I was gone but I considered stopping treatment but decided that it would only happen if I was too frail/ill to continue.   My first one (cancer) was NHL in the bowel, 6 doses of chemo, very ill could not work for 2.5 years had further chemo (4) two years later. Second one (CLL) was 6 years further on, I was given a 'terminal' diagnosis as they indicated I had a tumor (stomach) and bowel cancer. Fortunately they were wrong on that part, I requested a transfer back to my original medical staff at another hospital where they confirmed CLL but nothing else. This subsequently progressed to stage 4, schedule for chemo (6) got to 4 but wanted to stop, very ill, Dr's convinced me to do one more which I did, another 6 months off work. Third one, I never felt that I was 'well' after the CLL and 18 months later was given another terminal diagnosis (12 mths to live without treatment) I had MDS. The treatment of 14 doses per month would cease if they felt it was not working and I would die. Very fortunate to be accepted onto a bone marrow stem cell transplant system but had to cease the current treatment which wasn't great for me as it took a number of months for the transplant to be fully arranged, it was successful, months in hospital lots of GVHD complications, very difficult process, another year off work, still have 'legacy' issues but worth it in the end.   I did think of stopping treatment several times and of course other more drastic measures but I just could not give up, I had to see it to the end.   I do not judge you but I implore to fully discuss this with your medicos and your phycologist (if you don't have one get referred to one). Your mindset is never the same after a cancer diagnosis, we need all the assistance we can get. I am finding it difficult to get out in a few paragraphs what I went through over an 18 year period but I hope you can find the strength to continue on with your treatment, open up to your medicos on how you feel, they are dealing with people like us every day. Discuss alternatives with them.   Write down all your questions, use this list to remind you to get the answers you need, be persistent, this is your life their dealing with, they may not be the answers you want but unless you know how can you make the 'right' choices for you.   My thoughts are with you.   Colin. ... View more

Hi Dianna58, You are quite right the waiting is terrible, you will have to endure many things especially waiting, some experiences will be unpleasant etc. but each treatment or procedure is part of the way forward do not give up hope no matter what.   You are not alone, this group you are now part of have pretty much experienced everything to do with cancer, go forward, meet the obstacles head on, ask as many questions that you like from us, someone has been there before you. Try and stay positive as much as possible, there will be moments when all seems lost, grieve for the parts of your life that seem gone, cry when you need to, but always look forward to getting better.   It took me 18 years to be finally  free of my cancers, I waited on all the results, I waited on every Dr's opinion (still do on both of them), waiting seems to be a large part of what we have to do and will continue to do.   If you can get into a routine, I always (still) take a small bag with me, water, treats, favorite book etc, note-book (for your questions for the Dr, write them down when you think of them at home, there is no such thing as a dumb question). We (I) tend to forget things when the Dr's start talking as we (I) get easily sidetracked when they throw something else into the conversation. I always took a bag (my wife called it an 'expecting' bag) kept it in the boot of the car, it contained underwear, wet pack (shaving, tooth paste etc.) and other things for when they say you have to stay in hospital, which happened a lot for me. Just makes it a bit easier if its convenient and all there.   Whatever they tell you it can always be worse, try to stay as positive as you can. Thinking of you Colin ... View more

Hi Debbiev,   I am very pleased that the RCHOP worked for you, our doctors are learning new stuff all the time and modifying the treatments accordingly. I hope you remain well 'forever'.   But for me I am sorry to say I have not been in remission since 2005, in fact I have had two more different cancers and a stem cell transplant, now after all these years I am now in I guess what you could call remission, I look at it as having been cured 'for now'.   I was diagnosed with CLL in 2011, it went stage 4 in 2015. Five doses of FCR chemo (should have had 6 but much too ill), never fully recovered, blood numbers were always too low.   In 2016 I was given an 'absolute' clearance for CCL, on the same consultation I was diagnosed as terminal MDS with less than 12 months to live. Started on Azacitidine ( I think) 14 doses each month. Very lucky to be put onto a bone marrow stem cell transplant program (because of my age) which I had in early April 2017.   Had to cease the chemo (Azacitidine) to do the transplant, took quite a few months to arrange, quite ill. The transplant process for me was extremely difficult, mentally and physically, several months in an hospital isolation ward, a few complications (fewer than most), back into hospital a few times, quite a few 'legacy' issues still with me but some seem to be improving with time. Celebrated the 3rd anniversary a few weeks ago.   Still here, still okay. ... View more

Hi Debbiev,   You are quite right we are all different and the same or similar sort of treatment can have wide ranging effects. I had NHL in 2003 and was treated with CHOP (6 doses) which was a quite common treatment option, quite a difficult time, off, work for a long time. Rutaximab was available then but ONLY on the PBS if the CHOP  did not work, it was more freely administered until later on (and incorporated in R-CHOP).   In 2005 I did receive the Rutaximab (4 doses, 1 per month) after my blood numbers were not where they were supposed to be. I did not have any particular problems with it, primarily fatigue which appears to get worse as you age (my opinion only).   As to sleeping, like you I only slept for a few hours but now  I sleep a lot longer, I see that as a bit of a bonus actually.   Fatigue and chemotherapy seem to go hand in hand, a great toll is being taken of your body and mind during and after treatment. My words of advice are, stay strong, remain as positive as you can, there are times when it just builds up to much, then let it out. Go forward, just go forward, absorb the diagnosis absorb the treatment, nothing is going to change now. ... View more

Hi Debbiev,   I read Andrea's post and we all know how she is feeling, I had to reply.   Pleased to hear you are in remission, take care. ... View more

Hi Andrea,   Yes I still worry about every little ache or pain even after all these years, I guess it is something many of us just have to live with. Very glad your GP is doing the blood work, it is amazing what they can 'see' with the appropriate tests.   Good luck with the results, take care, we are here you need us. ... View more

Hi Andrea0613, Firstly welcome to the forum. Dr Google is a problem but it's pretty much what most of us do, and then we worry about it, and worry about it. I think you did the right thing in going for a second opinion, time can be critical IF there is an issue.   I myself had Non Hodgkin lymphoma (bowel, slight discharge of blood the only symptom) and as usual I was tested and you know the rest. Only worry (I know it sounds easy to say) when they give you a diagnosis (if there is an major issue) until then you are essentially okay but for your existing symptoms. I am sure (I am not a doctor) that there is a number of things that can provoke these symptoms, do the tests, listen to the medico's, if you are unhappy with them find another one.   Just a bit of advice, try to have someone go with you, another set of ears is essential as you may not take in all the Dr is saying. If you need it make a list of questions, do it, because we can get sidetracked very easily and forget to ask them all the things you wanted to know.   Take care and let us know how you get on. ... View more