When Palbocyclib stops working

Hi Sambob, I agree it is good to share our experiences and ways we deal with our challenges.i have been taking zinc and magnesium but I have not taken B12 so that is an xtra vitamin I will speak to my clinic nurse about and give a go.Good luck and I am sure that your hair loss will come to a resting point soon..

I have just changed from palbociclib to Capecitabine only just finished 1st cycle but already feel better in myself  so there are other options out there

Hope all goes well at your consultation.  X

Hello All,

I'm on Palbo and Letrozole and hair is thinning - wasn't thick anyway but I'm trying not to stress about it. Using Nioxin shampoos and products which I used when on Tamoxifen and I think it helped then - my hairdresser thought so too. Here's hoping it will calm down. I could give an update on this in a couple of months!

I'm only 2 months in and not planning any holidays atm but would love to hope I can next year - need things to look forward to. I've tried a few specialist insurance companies for a travel quote to Europe (just put an October date in just to see if I could get insured and more importantly the cost)  and so far after trying 3 companies I cannot get insurance. Please tell me some of you still holiday? Any recommendations for good companies? I've tried Staysure, Good to Go and Freedom Insure.

I have secondary breast cancer - bone metastases - no symptoms i.e. pain - discovered by chance when I had an MRI for sciatica which is now gone. Pet scan clear every where else. I read these inspiring stories on here of women leading full lives on these drugs for years, working full time but are we not allowed to have holidays? Hope to hear good responses! 

Keep strong everyone.

I did manage to get travel insurance to go on a cruise around Europe I could only get single travel insurance and not annual it cost me £78 which I thought was great but I can't remember the company they were recommended to me via the oncology nurses. If I can find the information I will let you know. I will say I couldn't get an online quote I had to ring to go through all my medical issues. At the time I had bone and lung mets but wasn't aware of spine mets at the time. Since covid hit I haven't tried going abroad. Hope this helps and if I can find the company I'll come back to you. Xx

I've just seen there is a travel insurance forum some people are recommending Mia Insurance or Saga.

1. Thank you for your response - since my post earlier I managed to get a quote of £850 for a week in Portugal - another was £1500 plus, and a final one was £2000. I will be ringing some of these companies on Monday and others to see if I can get this down. They’re ridiculous quotes! The questions don’t reflect my health position. Well done you for £78 - I wonder if Covid is being used as an excuse to inflate prices. Many thanks and it would be great if you could find the name of the insurers. I’m finding a lot of them are linked and websites virtually the same. Trading under different names but owned by one company. Any more recommendations/advice from anyone else would be good. 
   thank you all. 

Hi Samantha, I have been on Palbociclib for 2 years. It does make me tired but you may not be the same. I noticed you mentioned CBD oil.  I would definitely check with your oncologist first as there are some things you can't have while on the drug (eg grapefruit, pomegranates) and from the small amount of research I did a while back I think CBD oil may also come into this category. Best of luck with your treatment.

this is so good to hear. I have been on Palbo/Letrozole for 8 months, but the cancer kept spreading, so am starting Capecitabine next week. like you, I thought I had reached the end of the line, so thanks for your post. Fingers crossed.

So glad to help. I have had a few side effects with Capecetibine, but on the whole am very happy with it. 

Hi Pops59

I was re diagnosed with secondary breast cancer in 2016. I had another lymph node clearance before starting treatment.  The cancer is in my lungs and 3 areas of my spine.  I started with Capecitabine and Denosumab which worked really well until March 2018.  Severe pain and raised cancer marker  Further Radio Therapy and change to Palbociclib and Fulvestrant injections backed up with pain killers. This seems to be keeping things stable......... long may it last.  I am always reassured by my consultant who is always looking for alternatives for when the current treatment may begin to be ineffective again.  Fingers crossed.  Hope this helps.  Good luck and keep positive.  Lots of love Pauline xxx