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christieuk

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  1. Hello Dave Thank you for sharing your own story with me - I wasnt bored as anyone going through the same is always interested to hear others stories. I am very pleased that you are in remission as such and that they are keeping an eye on the suspicious node. I finished 4 cycles of carboplatin/gemcitabin mid April. I guess I was pretty "lucky" in terms of side effects, tiredness being the main symptom. I didnt have problems with constipation and due to the steroids, maintained a very healthy appetite throughout. My main problem which was dealt with by difflam and antifungals was thrush. I was never sick, again probably due to the antisickness meds I was given, although towards the end I tended to feel a little nauseaous. I had another chest infection after cycle 2 but again with strong abx and steroids, defeated that to successfully go on to complete the course of chemo only missing one infusion of gemcitabine. My last contrast CT scan after cycle 3 showed that the tumour(s) have shrunk and Im about to start 4 weeks of RT from 24th May. Not sure when my next scan will be, but both the onc and radiologist were very pleased with the last scan results, so fingers crossed that the RT works the last piece of magic and destroys the remainder of the tumours. I know what you mean about planning things in advance, as you do wonder whether you will be fit enough. Ive put off going on holiday until I am sure I will be ok for flying. Prior to getting LC I have got off flights only to be struck down with major asthma attacks, so Im very wary now having LC as well lol. I remain as always, resolutely stubborn that I will be a long term survivor of LC. As I say, I have more people to annoy yet lolol. I wish you and your family the best journey possible in your own battle. christie x
  2. Hi everyone - thanks for all your help and advice. have been onto the hospital this morning and they have agreed that I can have a PICC line next week. they will skip session 2 of cycle 2 which I was due today and go straight to cycle 3 in a couple of weeks time. i am so relieved that this is being done and hopefully the rest of it will go off without a hitch. once again thanks for all your advice and support. Judy sorry to hear that when you came off chemo things appeared to get worse for you, but as you say, stick with the treatment if it is keeping the beast at bay. christie xxx
  3. thanks judy for replying - from what ive found out, this is apparently not good which you confirmed. im quite flabbergasted by the chem nurses reaction - it was patently not working, yet they did nothing. Im speaking with my MAC nurse tomorrow and also the consultant's secretary - hopefully something can be done. Ive had so many setbacks already, I was hoping to get through the chem reasonably unscathed. christieuk xx PS looking at your chronology, how are you doing? x
  4. HI Everyone Just touching base. Have been keeping up to date with postings and keep gaining in knowledge so all to the good. Have started my chemo (after a long delay) but am having a problem pretty much each time I go. Im having carboplatin and gemcitabine. The problem is that I dont have the best veins in the world and I did mention before treatment started about having a picc or hickman line. My consultant said that there were more problems associated with having them, then just cannulas as and when I needed them. As Im now not on concurrent daily treatment, I didnt push the point (4give the pun lol). But 2 of the 3 times I have had chemo so far, Im getting swelling of my hand/forearm where chem seems to be seeping into my tissues rather than flowing through the vein. Last Monday's was particularly bad yet the chem nurse insisted that nothing was wrong and didnt remove the drip just wiggling it around until the drip finally drained (first bag of chem went through in an hour, but the bag of carbo took nearly 2.5 hours). Their suggestion is a "bigger vein and a pump" - personally if the cannula is not right again, it will just pump the chem quicker into my tissue rather than the vein surely? My hand/arm is still swollen and painful and I am due to have my second session of cycle 2 tomorrow (gem only). Im feeling very loathe to go for this at the moment. They will have to use my other hand and what happens if that swells as well? I can barely use the swollen hand (first session it was nearly 2 weeks before original hand felt better) so I dont need both hands to be out of action if I have the same problem tomorrow. Anybody's experience of this please? Am I right to "demand" that they do something as I have at least 5 more sessions to go? Thank you so much. christieuk
  5. thanks guys for all your good wishes and suggestions. im on dexamethasone now - hopefully this will improve matters. i will let you know the outcome and what Dr West has to say. christie x
  6. Hi everyone I am wondering if anyone could give me advice/information about any lung/chest infections they may have had please. I picked up a lung infection after my surgery to obtain a sample. This was on 10 December. I have been treated with a course of quinolone antibiotics (am now on my second course), steroids (being prescribed another course later today) and a course of clarythimycin (sp?) in between the two courses of quinolone. I am allergic to penicillin and put on spiriva alongside the symbicort which I already take for asthma. It doesnt seem to be shifting at all and this is making me short of breath on any kind of exertion. I am, as you can imagine, getting cheesed off now. This is delaying my treatment (am supposed to be starting on concurrent chemo and radiation for 6 weeks with a top up of alimta after that). Just had a call from my rad doc saying that if I dont improve, then the concurrent treatment/alimta wont be available to me. So if anyone has had a persistent lung/chest infection and successfully got over it on different drugs to those I have been prescribed please let me know. I am due at the hospital on Monday, so anything I can suggest would be great. Thank you very much. I hope everyone is successfully beating their own beasts! christie x
  7. Hi - thanks for the info about the port. I know about the Hickman line because my father had one 22 years ago when he was treated for leukaemia so I had hoped that things had moved along a bit since then. A port that is totally under the skin sounds ideal, no worries about keeping things dry and sterile and gives my poor veins a rest. I woke up with 4 holes in my hands and arms after the op (not including the drains), yet there was only one when I went to sleep lol. You are right Barb, the chamberlain procedure is a type of mediastinoscopy. I had this due to the location of the nodes involved (hilum and station 5). However, before they did this, they did try to do a VATS procedure, but it was understood that if the lung had stuck to the chest wall due to the previous surgery, then I would have the chamberlain. This turned out to be the case. I woke up with two chest drains, one for the aborted VATS and the other for the chamberlain - whether this was an extended chamberlain, I am not sure. I dont think it was the chamberlain that caused the infection, more likely it was the aborted VATS but I dont suppose I will ever find out. Funnily enough where they made the incision for the chamberlain, they cant have been more than a few centimeters from the nodule at the top of my lung. you would have thought it a golden opportunity to slice and dice that piece whilst they were in there lol. If my memory serves me correctly however, I think they havent attempted any surgery at the moment, as they dont want me taking too long to recover and having to postpone the chemo/rad. I suppose from that they are more concerned about the lymph nodes than the nodule. Similarly still not sure why I was tachycardic, maybe as a result of the lung infection. More importantly, why I was let out whilst only having 90% oxygen saturation is incomprehensible. Not sure around the world, but it is usually a minimum of 95%. Prior to surgery and whilst on oxygen mine was around 97% but without it was 90%. I just dont get why they didnt do a chest xray to see what may have happened. Still what is done, is done and its now onwards and upwards. Thanks everyone xx
  8. Hi Everyone Thank you so much for responding and telling me your stories. I hope you all had a good Christmas and are looking forward to the New Year. I am sorry I havent been on here, but Ive been on a bit of a down turn since I first posted. 3 weeks ago I had a Chamberlain Procedure just to obtain a sample for diagnostic purposes (nsclc stage 2) which I originally posted about. I was discharged less than 24 hours after the procedure: tachycardiac with bad SOB and SATS of 90. I am, to say the least, unhappy with this especially since a week later when I went to see my thoracic physician a chest xray showed a rather nasty lung infection had developed. Whether this was due to the aborted VATs procedure I dont know. Ive been on 10 days of a quinolone antibiotic as well as adding Spiriva into the equation along with the Symbicort which I take for asthma/mild COPD. Then I got the flu........ Fortunately I had had a flu injection, so effectively only had a "mild" dose but this is still hanging around and pulling me down physically. Breathing wise I am a lot better, but physically Im just about toast I am due to have my radiation planning appt this Wednesday but have still to meet with the chemo doctor. If I havent heard by Weds, then I will mention it whilst Im at the hospital. So far as I am aware, my timetable is going to be concurrent chemo/rad presumably providing I get somewhere back to how I was pre surgery. This is 5 days per week for 6 weeks. The chemo part is everyday for the first and fifth weeks and a couple of odd days in weeks 2 & 6. My question is that as I have pretty poor veins am wondering whether I should ask for a Hickman Line or just stick with a cannula as and when required? One thing I always find is that with cannulas my hand always swells. Whether that is a reaction to the plaster that holds it in place I dont know. Once the cannula comes out, the swelling goes away. I am in awe of those of you who have had surgery. Ive been told that mine is not surgically operable, which I cant understand why. The 1cm nodule was due to be resected, but couldnt be due to previous surgery I have had. I was also told that the lymph nodes couldnt be removed as the swelling is wrapped around one of the main arteries/veins to the heart - hence the chemo/rad treatment. Does this sound right? Any information/questions I should ask, please let me know. Kind regards and Happy New Year Christie x
  9. Hello/Aloha or as we say in the NW UK, Hiya everyone and thank you so much for the fantastic welcome. So many stories, so many people still here, so much insipration and so great!! I saw the oncologist yesterday, he is the radiation specialist. They have decided to hit me with concurrent chemoradiation, figuring that I can stand it and am fit enough too. Christies Hospital (i like the irony of "my" hospital lol) in the North West of England is a cancer centre of excellence. Their treatment plan when treating concurrently is Cisplatin and Etoposide plus I assume the radiation bit. It is for 6 weeks, 5 days per week with monitoring along the way and then follow ups to see what and where I am. I was offered the chance to go on a trial. I did decline as Ive felt all along that I was very lucky to catch this as early as I did. The "voice" is still the only symptom I have, if the swollen nodes were not pressing on the largyngeal nerve, I would not know a thing. Do you think I did the right thing turning down a trial? My reasoning was to go with the tried and tested and then if it all goes down the pan later on, then I have nothing to lose to try something experimental. My next step now is get over the lung infection, see the chemo doctor next, another scan for planning purposes and then starting treatment somewhere around mid January. I would love to hear from anyone who has been treated concurrently, Ive been warned it is a particularly rough ride but hey ho who said this was ever going to be easy. Ive a holiday booked, for dare I say, Cuba next June for my husband's 60th birthday and if I can, thats where I want to be. christie xx
  10. Hello Donna. I am mightily heartened by your story. My story started with what was thought to be laryngitis commencing in early Sept this year except it never went. Chest xray - clear. antibiotics did zilch so an appt with an ENT doctor. A view down my throat showed my left vocal chord was paralysed. CT scan was the next order of the day and this showed a nodule in the top of my left lung and lymph node involvement in my chest - this was pressing on the largyngeal nerve and causing "the voice". T2N2 was the CT scan result. A PET scan followed and fortunately there were no more surprises. However, they decided to do a CT of the head as apparently PETs dont always pick up the head very well. Again result nothing in there (least of all a brain lol). Set of lung function tests were fine. Due to location, a needle biopsy was not possible and nor was VATS unfortunately due to previous chest surgery this in turn impacted that they were not able to resect the nodule last week so had to settle for a surgical biopsy (mediastinectomy). The result came through today. I have an oncologist appointment this afternoon and the plan of treatment to be sorted. Initially it was thought to be concurrent chemo/radiation but having got myself a rather serious lung infection post surgery this may change. Im currently taking prednisolone, spiriva inhaler and a rather strong antibiotic - levofloxacin to get shot of this setback. So the treatment may become sequential. As I said at the top of this message, it is good to meet someone so far past their original diagnosis. Im not a quitter and as my husband said, i owe him another 22 years of marriage at least, so there is a date to aim for. thank you for taking the time to reply christie x
  11. Hello everyone - realised I posted this in General when it should have been here lol I am new to this site and have just been diagnosed with NSCLC Stage 2 adenocarcinoma primary lung tumour. I have some lymph node involvement. Would anyone here please share their own experiences of battling this beast with me? thank you and seasons greetings christie
  12. Hello everyone I am new to this site and have just been diagnosed with NSCLC Stage 2 adenocarcinoma primary lung tumour. I have some lymph node involvement. Would anyone here please share their own experiences of battling this beast with me? thank you and seasons greetings christie
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