10 day suspension of afinitor

[Julie2233]

I was just getting to grips with afinitor and exemestane then I caught a cold. The cold went pretty quickly but left me with sinus issues and a persistent cough. I also had cold sores on my lips and in my nose, the virus retreated but the sores just won't heal. Over the weekend I just felt that I'd run out of energy. This morning I admitted defeat and rang the hospital helpline. To cut a long story short I spent the afternoon in the oncology unit.

The first nurse I saw was lovely the second was probably the rudest I've ever experienced! 5 yrs ago I would have tolerated it, today I was just as 'direct' back and she altered her attitude. Though she did tell he that the cold sore virus would kill me before the cancer did! Complete rot and she should know better!

Anyway, my bloods were fine but I'm dehydrated, and infection markers are up, but because of the issues I've had previously, the afinitor has been suspended for 10 days and then a new treatment plan will be considered at the end of next week, possibly a reduction from the 10mg dose.

When I went in I was determined that I didn't want to suspend the meds, but now it's been done I feel quite relieved. I'm off work this week and had got so much planned to do with my precious time off and so far I've crashed on the sofa and had a trip to the hospital.

My friends have changed our plans and we are now going to have a spa afternoon tomorrow. Hopefully the warm damp air will help my sinuses!

On the positive side puppy Henry is settling in quite nicely and is now definitely one of the gang! 😊

[Francesca10]

Hi Julie

Sorry you got sick. Did they give you anything to help heal the cold sores? Valtrex helps. Lysine is a natural remedy for them. We are more susceptible to all kinds of infections but that doesn’t mean we can’t have them treated. Feel better soon♥️

[Julie2233 in reply to Francesca10]

Thanks 🙂

I've had them my whole life and in the couple of years before my bc diagnosis they got significantly worse and I referred to an immunologist but she couldn't find any reason why. I know think it was body telling it was out of kilter due to the cancer developing.

I take aciclovir tablets daily which normally keeps them at bay but if I forget or get run down they make their presence known. I get them all over the skin surrounding my mouth, in my nose and also in my eyes.

The virus can become systemic when the immune system becomes critically compromised but as far as I understand it that only happens when the body is already failing, which is what I explained to the nurse and she had been he good grace not to argue. I think she was just trying to frighten me because I'd told her that the virus wasn't active and she didn't believe me.

Thanks for the tip about the lysine, I bought some lysine ointment at the weekend - first time I've seen it for sale.

[Hidden]

I don't eat meat nor fish, so I supplement with a liquid B12 and by accident discovered that when I put a few drops of B12 on my coldsores, it immediately helped and they're gone in no time. I used to get them all the time but not since taking B12. Sometimes if I think I feel one developing, I put B12 on it immediately

[Julie2233 in reply to Hidden]

I've always taken b12 tablets for a geographical tongue, never thought it might help the cold sores. I'll try it, thanks!

[Hidden in reply to Julie2233]

I've only used the liquid as that's so easy to apply to the sore. Hope it helps you too ❤️

[Julie2233 in reply to Hidden]

Got some yesterday, the sores have already started to heal now i’m Off the meds but I applied some of the liquid vitamin and my face is significantly better today. Might be a coincidence but i’m Still having quite nasty nose bleeds from the sores inside my nose which haven’t had the vitamin liquid applied.

[Lovemylakie]

I am sorry to hear about your cold sores. My late husband fought with them. I too am on the same meds. I got a cold and it went pretty fast but I cannot get rid of the cough either. It has been over 3 weeks now. Just can't get the phlegm up. Sometimes I feel like I am coughing up a lung.

I hope you get to feeling better soon. Try to rest. Have fun at your tea. I love having English tea time. Just not the same here in Indiana😊

Take Care

Robin🌹

[Julie2233 in reply to Lovemylakie]

I’m the same. But i’m Always the same when I get a cold, I always cough all winter. I sound like a heavy smoker when i’ve Never smoked a single cigarette.

Have you spoken to your consultant about the cough? It needs to be checked out as it could be a side effect of the meds.

I’m looking forward to my spa afternoon 😊

[Lovemylakie in reply to Julie2233]

See my oncologist Dec 6

[Rotagirl]

Hi Julie, sorry to hear about the cold sores, it sounds b painful. I have my usual mouth ulcers at the moment. I think I have gone through everything Boots has to offer. Hope you feel better soon and enjoy a break from the damn stuff. Fayx

[Julie2233 in reply to Rotagirl]

If you haven’t already tried it, ask your unit to prescribe gelclaire. It’s a sachet if paste which you mix with water and it coats your whole mouth. It’s very soothing. 😊

[Barbteeth]

I’ve always suffered with cold sores...I bought a device called virulite which works well

It’s an infrared light thing that you place over cold sore and it bleeps after 3 mins...works even if cold sore has developed ...there are lots of different makes around..worth it IMO

Barb xx

[Julie2233 in reply to Barbteeth]

I tried one when they first came out about 20 yrs ago, I didn’t find it effective but the tech must have moved on since then, i’ll Have another look 🙂 thanks for the idea! 😊

[8576]

Hello Julie, I am fairly new to this forum. Finding it very helpful. I have a suggestion for your cold sores. Whenever I feel one coming on I start applying hand sanitizer to it. It works amazingly. My cousin tried it also and it even stopped it developing. I just tried it out of the blue and was amazed at the results. Dried the sores up or even stops them from developing. I applied it during the day after eating or anytime I felt it was needed. No harm done to try it anyhow.

Good luck. June S. (Minesing Woman)

[Julie2233 in reply to 8576]

That's something I now always carry! Thanks for the tip, I'll try it! 😊

[8576 in reply to Julie2233]

Hope it works for you. Let me know.

All the best, June

[Julie2233 in reply to 8576]

After the talk of coldsores as I was driving home this evening I felt the first tell tail sign that the coldsore was reactivating. I had some hand sanitizer to hand so tried it. It stung but stopped the itching and tingling sensation straight away. Before aciclovir became available I remember my mother applying perfume or neat alcohol to coldsores as they developed. I suppose it's the same principle.

[Hidden]

Hi Julie,

I'm sorry to hear about your trip to the hospital. I can't believe the way the second nurse treated you. How rude of her! I hope you feel better soon. Enjoy your spa treatments tomorrow.

Sophie

P.S. It's nice to see how well little Henry is settling in!

[Julie2233 in reply to Hidden]

I think I gave as good as I got. I asked for a copy of my blood results for my records and she questioned why I wanted them and asked if I understood them! I replied that I did, and sweetly asked if she needed me to explain them to her 😊

Henry now feels as though he's always been here. He's an absolute sweetie though I'm not sure if the 2 older dogs would agree 😊

[Hidden in reply to Julie2233]

Good for you! I have been spoken to like that too and questioned when I have asked for pathology and radiology reports. We have a right to them, and should not be questioned if we ask for them.

Henry looks like a little treasure!

Sophie

[hdhonda]

Julie

I hope you feel better very soon. It was great to hear that you bit the mean nurse back. One time when someone was ugly to me without cause, I said who licked the red off of your candy. They looked at me dumbfounded and then the light bulb lit up. I have used it many times since. Blessings Hannah

[Barbteeth in reply to hdhonda]

Love that comment!!

One of my favourites is ‘who knitted your face and dropped a stitch’

No need for rudeness

Barb xx

[hdhonda in reply to Barbteeth]

Now I have two. Loved yours too. Blessings, Hannah

[Sunnydrinking]

Hi

Sorry to hear about your visit to the hospital and the rude nurse. My comment to rude people on duty in any workplace is “do you enjoy your job?”

Still not completely over my cold but nearly there.

Hope your cold sores clear up soon - I usually dab alcohol on them but it sure does sting.

Love your dogs.

Take care

Jo x

[Julie2233 in reply to Sunnydrinking]

My mum used to do that and June suggested hand sanitiser which I think would work in the same way.

My diagnosis has made me far less willing to accommodate rudeness from professionals and it's quite satisfying to bite back.

Jxx

[Julie2233]

I've been off the afinitor since Tuesday and I feel so much better. I hadn't actually realised how ill I felt.

I suppose every workforce has a mix of personalities, but this nurse was a bully. Only 5 yrs ago I would have felt crushed by her nastiness and probably believed her but the thing this awful disease has given me is the ability to not just take that sort of behaviour. I wasn't overtly rude or nasty but I'm not going to intimidated or frightened.

I've had a nice few days enjoying myself with friends and feel ready to take on the world again 😊 Jx

[Tam-56]

Your babies are beautiful! I said goodbye to my beloved Bearded Collie Tuesday. He was 16 and died in my arms a little past midnight ...my heart is broken. I have another beardie, she is 12 and we miss him so much.

Look at those three amigos snuggling by the fire! Priceless!

Drink plenty of fluids and rest. I am plagued by sinus infections too during winter months. They are so hard to shake off! I find that my cool mist vaporizer is soothing at nighttime. Sending you healing thoughts!

[Julie2233 in reply to Tam-56]

So sorry to hear of your loss. I lost my old girl, Bethan, 4 yrs ago and I still miss her. She was 16. Losing them is so hard but the price we have to pay for the sheer joy they bring.

My friend, Jane, shows beardies and they are beautiful dogs. 16 is such is good age for a beardie - he must have been very happy with you.

Henry is well and truly ensconced in the pack. He is such a happy puppy and such a delight to have around. Tess is now 15 and not well but she doesn’t know it and lives in the moment, she has even started to let the puppy cuddle up to her as long as he’s very respectful 😊

I feel a lot better now i’m off the meds and have had a week of rest, i’m still coughing but not as violently. I find that steam really helps.

[Tam-56 in reply to Julie2233]

Sean showed no signs of aging until about two years ago. Very strong willed Beardie and kept me laughing every day with his antics! I’m glad you are feeling better!

Enjoy your new pup, Henry, and the rest of your pack. Unconditional love!

[Julie2233]

Wow! I was given 5 boxes of it! It made a huge difference. Glad I didn’t have to pay for it!

[Julie2233]

Yes, I had the same. The inside of my mouth was completely covered in ulcers and down into my throat. Made the nerves in my face hurt. They started to heal after around 2 weeks and then I was given the gelclair as an after thought. I only needed a couple of sachets.

Then the coldsores erupted which were on my lips, face and inside my nose. I look gorgeous! But coming off the meds seems to be helping them to heal, and the acne and irritated skin has improved. Find out on Friday if oncologist will reduce the dose of the afinitor, I don't think I can continue on 10mg dose.