01-09-2017 01:14 AM
Ramade, I'm very sorry to hear this. We wear our hearts on our sleeves when these drugs fail. We count on each and every drug working on us to give us more life. We keep on truckin through life hoping and preserving, then when something fails we go running and want to hide with our tails between our legs. I don't remember what treatments you have had. Have you had a lot of chemos? I had quite a few chemists and this is my second hormonal. If this fails it's back to chemo. I've never had tamoxifen and she said it won't work for me since both hormonal were given with something else. She said a single agent win t work now. I will go back to chemo, but when I get down to no choices I will fight for tamoxifen.If you haven't had chemo please don't be afraid of it. I had more side effects from these hormonal than I did chemo. Each of us is different, but I had a long run out of navelbine (vinorelbine). My oncologist said he had many ladies do well on it. Few side effects and long runs. I got 5 years with it. Maybe, you could give it a try! I hope radiation is easy for you. Big hugs!! FF
31-08-2017 04:39 PM
Hi there ff srilata. I have had some very bad news that the e/e combination that I have been taking has not been working and the cancer in bones has spread, I now have to have radiation to top of spine as it is pressing on nervesand sending pain across my shoulders and down my arms. I'm feeling sick with worry because I knew it would perhaps only work for a limited period
Not to work at all is devastating and I don't understand why- I couldn't ask I was trying to keep back the tears while I was in there. I don't know yet what they're going to give me next. What if nothing works? Sorry I'm in a real state.
07-08-2017 02:57 PM
07-08-2017 02:41 AM - edited 07-08-2017 02:43 AM
Ramade and Silrata, I'm still itchy but onc doesn't feel I need a dose reduction. I don't have a rash, but I have a lot of dry skin. I think this makes me itch. I'm still having post nasal drip and a lot of having to clear out my throat! Annoying but doable! My scan said stable with a few nodules shrinking. I thought the drugs weren't working. Post nasal drip is usually what starts happening to me when a drug is failing. I guess this time it must be something seasonal causing it! I'm having a rough time going to sleep. I don't know why. I walk around here in the evening, barely staying awake. I hit the bed and my mind won't stop! I lay awake for hours. When I do sleep I'm lucky if I sleep 3 or 4 hours. When it's time to get up I'm ready to sleep! I think it started with the stress at my old job, then the scans, and new job. I'm hoping this ends soon since I have my scan results and love the new job. Lol, now my mind has been on all the activity ideas that I want to create.
Hope you both are doing OK and maybe even having some fun! Our budget is tight so no big vacations. We have been keeping busy with a lot of small activities. We both have Thursdays off and enjoy going out and about on it because it isn't as busy as a weekend. This week we went to a place called the Conowingo Dam. It was built to generate power. They have picnic tables and people fish there. It us a great place to view Bald Eagles and osprey. We packed a picnic lunch, binoculars and our cribbage board. We saw 5 eagles and several osprey with fish in their talons. An Amish family was fishing and the father caught a 40lb catfish! I won all 3 cribbage games! Have to pick a place for this Thursday. Have a good week! FF
06-08-2017 05:52 PM
Ff, hi, well done on your new job. How did your scans go and how are you feeling generally.
srilata, good news for you, I am pleased. I am ok, chugging along, having a clearout.
love and hugs
28-07-2017 05:08 PM
17-07-2017 05:54 PM
Dear Srilata, sorry I have not replied before but the dog had chewed through both my battery chargers and I had to order more. So sorry you are having problems, I'm sure there is something they can do, this must make you tired I should think. You have done so well so far, having been on full dose for such a long time. If they can't fix it they might bring down the dose.I am on 5 mg now which haven't given me any side effects so far. Having a bone scan on Thursday, it seems it's quite difficult with bones to see how well it's working because the damage done to bones takes long time to repair even on working medicine, so they look for spread.
let me know what they decide to do, you are so brave.
17-07-2017 02:33 PM - edited 17-07-2017 02:37 PM
Srilata, I don't know much about blood levels and problems. I don't know if it's safe to take iron, but would Google it. I do know you could also increase your red meat consumption to raise the hemoglobin levels. I do know low hemoglobin can make you short of breath bc you need hemoglbin to carry O2. Sorry, I'm not much help! FF
16-07-2017 05:50 PM
16-07-2017 05:44 PM
16-07-2017 10:21 AM
16-07-2017 12:45 AM
15-07-2017 05:18 PM
06-07-2017 02:27 PM - edited 06-07-2017 02:28 PM
Ramade, When I first started this I journey of lung mets besides the post nasal drip I had a weird sneeze. I would get a tickle in my throat and it would trigger a sneeze. The sneeze didn't come out my nose it came out my mouth. I did Google it years ago and you can sneeze like that. This sneeze would happen sometimes like 100 times a day! I seriously am not exaggetating. It was awful. Between the sneezing, coughing and post nasal drip, I would end up at the trash can. When I would have a bad episode I would have a difficult time catching my breath. I would lose control of my bladder too! When I would eat I would get more post nasal drip! This was all a vicious cycle. It would happen at friends ,in a restaurant, etc. Quite embarrassing! I git that I didn't want to leave the house. I had to carry a diaper bag with change of clothes and even shoes! This went on for 7 years!! Then when the tumor was closing off my bronchus I had radiation. When I was finished radiation it was gone! I kept waiting for it to return. Weeks went by and it was still gone! I was still afraid to think it was gone, bc when I got a cold the sneeze woukd go away and I would be hopeful it was gone. Then a couple days after the cold I might get 3 or 4 sneezes, each day for about a week the sneezes would increase until back to my pattern. I just didn't want to be hopeful and have a broken heart. A couple months went by and nothing. Well now 5 years have gone by!! I talked to my oncologist when all thus was going on. He said he didn't know what could have happened, but he was positive that the sneeze and p ist nasal drip weren't cancer related. The radiologist says she doesn't know what could have happened, but she does feel that it's obvious that something did. My new oncologist agrees with me that it was from the cancer, but has no explantion either. She wasn't my oncologist til after all this. I would love to have an explantion out of curiosity, but will just be happy it's gone!! I hope it never comes back. FF