Breast Cancer Now Forum

Thanks Jackie, If you'd like to send me a private message with your email I can send you links and the on line pharmacy I bought it from.  Keep in touch, and remember to ask, ask,ask. It is something we learn to do here in France because the attitude tends to be if you don't ask you either know or don't want to know. Sometimes it's like getting blood out of a stone. I have heard that sucking ice cubes helps. I had several types of anaesthetic type potions to use. They lasted about half an hour. Useful before eating or going to sleep. Hope you have a good week. Best wishes, Linda         ... View more

Hi Jackie, You have my heart-felt understanding. I survived 3 months of Everolimus and then refused to continue it. It made me feel so ill with all the issues you raised and more. I clocked up 12 different SE's by the end. I was on the full 10mg dose one tablet a day. I believe there are lower doses, so it may be worth asking at the hospital. Why are you going to the hospital for it? Seems odd as the tablets are normally given in boxes of a months supply.  The mouth ulcers are the worst. Nothing I was given helped. In the end I found a priduct based on aloe vera which was brilliant. It is called Apht Alvea. I dont know if it is available in the UK. I had to blitz food so I could drink it through a straw. It only got better when I stopped the drug. Good luck with it. Pester your medical team for help. I have my next blood test tomorrow, so I am hoping that the Examestane has been sufficient to keep me in remission. See oncologist on Monday. ... View more

 Hi Rose, the tiredness and general fatigue is frustrating. The only way to deal with it is to listen to your body. If you need to rest, do so. I find pacing myself has become more and more important. Im not very good at it yet! Problems sleeping is an SE of Examestane. Perhaps a discussion with your doctor might yield some help? The other thing to be aware of is the amount of energy your body needs to fight the disease. I have lost a lot of weight since the beginning of my treatment, so it was suggested that I used a protein supplement to ensure I was getting enough nutrients. This has really helped stabilise my weight and increase my energy levels. Discuss it perhaps with a dietician. Hope that helps. Hang in there! Linda ... View more

What great news about your scan. I'm so glad the new dose seems to be working. Long may stability reign for all of us! Try not cut yourself again... Have a great weekend. ... View more

HI Rose and Edwina, Thanks for your posts. I am watching them with interest, and really hope that the reduced dosage of Everolimus is better not only for you, but for anyone else. I am currently off it altogether for the next three months as I just couldn't cope with the SE's any longer. My scan in December was good, so my oncologist is content just to monitor for now. I hope the Examestane will be sufficient to keep the beast at bay! Should the next blood test show a rise in the cancer markers, then we will no doubt have to re-consider the treatment plan. Next test and consultation in April. Although I still get waves of fatigue, I feel so muchbetter without the Everolimus. Issues now are breast-bone pain, aching knees and ankles - possibly tiredness, possibly the Examestane, or the last vestiges of the Everolimus. Thank heavens my mouth is back to normal and food no longer is tasteless or bitter!My weight has gone up a bit too which is a relief. Good luck to you both. I look forward to reading how it all goes for you both. Best wishes Linda ... View more

Hi Edwina, Rather than worry about what might be, simply keep a note of what you experience. I created a weekly chart listing the most frequent SE's with an extra line for 'other'. I can let you have the chart I use (I'll havt transçate it first as it is in French.) It is auesful tool to discuss with GP/Onc etc. Over time you can see at a glance how things are going. I used a scale as follows: 1 = occasionally 2 = frequent 3 = very frequently 4 = all the time.   Maintain your mouth-wash routine - 5 ml bicarb in 500ml water, and teeth cleaning after every meal.   How long a gap did you have between full dose and current dose? I was told 3 months was needed to ensure it was completely removed from the body. This ensures that all the old SEs have ended. This is what I have been allowed to do. I must say just two weeks free of the drug and I feel so much better.   Good luck. Thinking of you and crossing my fingers for you.   Linda ... View more

Thank you all for your positive vibes! I do so appreciate them. My GP is pleased that I have a three month break from the Everolimus. He said this amount of time is needed for all side-effects to be cleared before anything new is given. So that was encouraging. We also discussed the possibiloity of moving my treatment elsewhere should my own oncologist not return. My message to everyone is to talk out your feelings, use all the support agencies that you have at your disposal and don't be afraid to complain if you are not being treated with compassion and understanding by those who should know better. I already feel heaps better, am laughing again, and hooray, my weight is starting to go up! Off out to play cards this evening.  Best wishes to you all Linda ... View more

Hi everyone, Asd promised here is my up-date. Saw a replacement oncologist ( me regular doctor is ill). She was awful! However I am off the Everolimus for three months. New blood test in April. If markers rise again, my dossier will go to the multidisciplinary team. Today I am seeing my GP in order to ask for a second opinion, and the possibility of changing my treatment centre. I'm happy to report that I am already feeling better. Had the best night's sleep ever yesterday - wonder if it was the two glasses of wine I had at lunch-time!!! My mouth is improving - discovered a wonderful mouth-wash that really helps. It is called 'Apht Alvéa' and contains Hyaluronic Acid and Aloe Vera. It is brilliant! Soothing and healing even after one treatment.My only issue now is the uncontrollable trembling of my body - legs in particular, and of course the depression resulting from the Examestane which is being continued. Hang in there everyone. Together we can do this! Linda ... View more

Thanks Edwina, I have been carefully charting the SE's, using a chart suggested by La Ligue Contre le Cancer'. Putting together the three monthly summary has bee interesting. The first two months were not too bad. It is only the third moth that has seen everything escalate. What really annoys me is that my GP has been unable to have a telephone conversation with my oncologist, who apparently only responds to letters! Not helpful when the doctor is sitting at your bed-side, despertey concerned about the SE's. At least the bronchitis is getting better, but I feel as weak as a kitten. Managed to hoover two areas of the house yesterday morning and was bush-whacked for the rest of the day! Now suffering with night sweats just to make my joy complete. Be in touch tomorrow afternoon/evening once I get home and have a new action plan! Linda ... View more

Hi Porkie, Thank you for your encouragement. I hope I will get a break to allow mouth to heal. I am on the full dose of both, so I hope A reduction might also be possible. However any return to the mouth ulcers without satisfactory help to deal with them will trigger rebellion two! I would prefer to return to chemo - at least the follow-up is more frequent, especially if it is weekly. The good news is that CA 15 has fallen from 371 to 174, with similar improvement on ACE. Will let you know what happens on Monday.   ... View more

Hi Edwina, I do sympathise. I am so fed up with the se's that I decided to stop tzking the Everolimus. I totalled up all side effects. and I have 11. Itchy skin - back and chest, ulcers galore  the worst one has lasted 3 weeks, and is right in the centre of my lower lip so it catches the edge of my teeth. More are evolving - under my tongue, on the gums and high up inside the cheek. Nothing suggested by dr or oncology brings relief. My next task is to check off which SE comes from which drug before I see the oncologist on Monday. The consequence of all this is that I can no longer eat properly, I am mal-nourished, therefore weak and tired and very depressed and rapidly losing weight.The rebellion has started, as I am refusing to take the Everolimus. Isthere a plus? Well the scan seems to indicate reduction, and according to my GP is encouraging. Ill know more on Monday. I am also seeing the nutritionist for some help. Things I have tried for the itching include Aloe Vera gel. This is cooling and brings some relief. The best relief I have discovered for my lips is a hole-made concotion of Coconut oil, Olive oil to keep it softer and therefore easier to apply together with a fewdrops of Tea Tree Oil. I would like to stop both drugs for a while to give my body time to heal. Then I think I would prefet to return to the chemo! At least with that I was monitored more frequently, and Se's  could be dealt with rapidly. Ontop of everything I have hzd bronchitis! So 2015can only get better! Hope you find some relief for your itching. Do share. Best wishes  Linda   ... View more

Hi Everyone, Just wanted to wish you all a happy Christmas. I hope the New Year has good news for us all. Nearly three months on this combo - and I  now have a dreadful bone inflammation on the sternum. Not sure if it is a SE or something else, but I have had to go onto morphine for the pain! I'm beginning to hope the oncologist will take me off the Everolimus.... the tablet seems to get larger every night - and oh the waves of fatigue... thankfully the latest round of ulcers has cleared up with a great antiseptic mouthwash I found. That's a definate must have in the cupboard! The blood in my nose seems to be getting less, itchy rash on my back just as bad though, and painful spots on my face and on my scalp. Haven't had such yellow heads since my teens Grrrrrr. Oh and I've had a strange bruise on my chin for the last two weeks - looked as if hubby had thrashed me. My GP reckons I'm having too many SE's. Ah well we'll see what the oncologist says in January. The good news is that my nails have finally grown out after the chemo damage HOORAY!!!! All I need now is for them to grow a bit longer so I can make a better sound on my guitar.And hey guys - we are alive and kicking. So once again girls, happy Christmas. ... View more

You are most welcome. I sympathise with the ulcers - I am now sporting 3 - inner lip and two on my tongue. It's quite an art holding an ulcer pastille in the right place!!! The other thing I have noticed is that a lot of food seems to have a slightly bitter back taste to it. Talking of food, I don't know if you have been told or not, but you must not eat grapefruit with this medication. Good luck, and keep in touch. Best wishes, Linda ... View more

Hi Edwina, My oncologist said that the SE/s should lessen with time. However as we are all different, it is important to discuss this with your oncologist. My understanding is that it needs at least three months on the treatment before one can begin to assess its effectiveness. In my case this will be a scan, followed by blood test including the cancer marker. I then see my oncologist to evaluate the treatment. It also took about four weeks of adjustment from the end of chemo before the new treatment settled down and I began to feel better. I now feel on good form, and apart from the minor irritations I shared earlier, I don't feel ill at all. Be patient with yourself, but I do think you are asking important questions which should also be addressed to your medical team. You might find these links of use: http://chemocare.com/chemotherapy/drug-info/everolimus.aspx#.VIbUozHF_-E http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Cancergrowthinhibitors/Everolimus.aspx http://www.nlm.nih.gov/medlineplus/druginfo/meds/a609032.html   The message on all sites is the same : talk to your health-care team. Hope this helps Best wishes, Linda ... View more

Thanks Glo. My GP said that scanning too early does not always give an accurate result so here they tend to give at least three months before ordering one. My treatment change was made because the CA15 marker hadn't significantly changed after 4 months of chemo. Enjoy your trip and have a great Christmas. Linda.X ... View more

Hi Glo, Scan is scheduled for December 30th. I then see oncologist on Jan 8th. We'll know then. I feel good, so fingers crossed. How are you doing?     ... View more

Hi Pam, I have been on Examestane and Everolimus for 2 months now. SE's seem to be minimal. Fatigue is the one to watch - so pace yourself during the day. I also have some bleeding in the nose when I blow it - again it is not too troublesome. There is some joint pain in my back - lumbar region. I have had an ulcer in my mouth, and sometimes my tongue can feel sore. I've also developed an itchy rash on my back. All these things are treatable. For my mouth I continue to use a mouthwash made of 5ml of bicarbonate of soda in 500ml water, a soft tooth brush. I clean my teeth and wash my mouth three times a day, after meals. I have also had some mouth ulcer pastilles to suck - from Boots. Sucking mints can also help. General aches and pains I treat with Paracetomol or a combined paracetomol/Tramodol tablet. Aloe Vera gel has helped the rash; If the skin around youir nose or your lips feel sore, use Vaseline. I asked my oncologist about this this week, abnd she said the effects should lessen in time. The thing to remember is that we are all different, and we all experience different degrees of SE's. Best thing is to talk to your oncologist or GP if you are worried. Hope that helps, Best wishes, Linda ... View more