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LibbyA
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Joined 7 years ago
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Re: Late onset Radiotherapy issues
TonyaM said: Hi @LibbyA, sorry to hear this. Radiation is the gift that keeps on giving. I know it can cause a pneumonitis- not sure if it’s the right term. I had radiation back in 2003,following a lumpectomy. I ended up with lung scarring and after 7yrs,cancer was back in the same spot and much bigger! I can’t help feeling that radiation may have caused the second one. My breast went rock hard and always felt weird. Even after a mastectomy, the skin still feels tight and weird Was the lung issue in the same side as the radiation?34Views0likes0CommentsLate onset Radiotherapy issues
I had radiation therapy after surgery on my left breast over four years ago. In the last couple of months I have developed something called Bronchiolitis Olbitrans Organising Pneumonia (BOOP). One of the causes cane be breast cancer radiation, however my cancer was the outer side of my left breast and the lesions from the BOOP are upper outer side of right lung. Has anyone else developed this? I’m really lost here. I did not have chemo if that makes a difference.Re: Feeling a failure
Thank you all. I spoke to a new oncologist yesterday. Mine is on maternity leave. She said with the side effects I have had on all four of the hormone blockers, she would refuse to prescribe them for me. She had read about the trials with Desloratidine overseas and said if my GP or immunologist was happy for me to take them, to keep going. She also said no smoking, no alcohol, lots of veg and protein and walking and less stress are all good at stopping recurrence. If I sit around feeling bad because of pain or neuropathy and or walk and fall, they are bigger risks. She told me not to doubt myself. I’ve given them a try. She has seen people get recurrences while on them and others who have never taken them have no recurrence. Sometimes these things just happen. So I feel better now knowing she would refuse to prescribe them for me. It’s no longer my fault, but the fault of the drugs.11Views2likes0Comments- 16Views1like0Comments
Re: Feeling a failure
I know my percentage if I had chemo was 1%. They were not game to give me chemo due to my allergies to all but one antibiotic, and my mast cell issues. I couldn’t even have the blue dye for the node finding. And cancer was in one node so I really wanted to stop it coming back. On the UK NHS site I worked the difference at about 3% if I took blockers or not. It makes no difference. If Intake them, I’m in a wheelchair, and fe by someone. Without them, I’m walking, cooking, gardening, etc. It’s not the pain. I’m used to pain, it’s the not being able to move properly.9Views0likes0Comments- 10Views0likes0Comments
Re: Feeling a failure
@FLClover I looked at the results from Europe and US on Desloratidine and the ‘p-Value’ was 0.001. I had no idea so asked my pharmacist uncle and biochemist friend. The p Value is whether the drug in the test was the reason it worked or if other things came into play, like chance. A p-Value of less than 0.05 is considered to be the drug is what caused the result. Desloratidine was 0.001 so they are pushing for more research. The other antihistamines didn’t come out as well. Desloratidine is sold as Aerius or just Desloratidine generic. My immunologist told me to give it a go. I find it useless as an antihistamine so have to take others as well for Mast Cell activation, but he said just to add it to the others.8Views2likes0CommentsRe: Feeling a failure
Keeping_positive1 said: Please don't beat yourself up! I also had severe side effects and stopped taking them at the 4 year mark. My understanding also is that the most benefit in my case was in the first three years of taking an AI. I nearly burnt my house down because my memory got so bad I forgot I left the griller on in the kitchen and went outside. I also could not toilet myself properly because of the stiffness in my elbows. I would mix up my thyroid med (my thyroid packed in after the chemo, radio and one year on AIs) and AI and take the wrong one, and I also lost balance a couple of times and fell over in the street. I probably would have been dead by now if I continued on with an AI. Will my cancer return? I don't know! What I do know is that I have a better chance of staying alive not remaining on an AI that was causing me so much pain and not to mention the insomnia I was going through. I ended up seeing a psychologist not knowing whether I was "arthur or martha". For what it is worth I also started to feel better once off the AIs, and wondered should I try them again. The oncologist said no! After what I went through I know I made the best decision to call enough is enough, with the blessing of my oncology team. Besides, even though those that remain on an AI for 5 to 10 years, can still get a recurrence. Give yourself some grace and love yourself, because you know how much you went through, through no fault of your own. Take care and enjoy your life. xx I am almost at the four years mark, but the onco wanted me on them for ten years. Apparently that is the new idea. I also left the stove on several times……… I feel healthier off them. I am using Desloratidine as well as other antihistamines for a mast cell issue and Desloratidine is being researched to stop recurrence, so not sure what else I can do. I’m sure I’ll get over it. I am currently waiting for my four years tests results.7Views1like0Comments
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