I’m having my treatment privately, but my insurance wouldn’t pay for the guardant test.
I paid for it myself. I think any hospital could get hold of the forms and it was just a blood sample that was sent by courier to the company. Since the last post I had some emergency surgery & biopsies of peritoneal mets. They showed I am less ER positive now, so my oncologist doesn’t think Alpelisib will be an option for me any more. I’m still on IV chemo.
I did e-mail someone at NICE & they told me that despite the pandemic, they are still on track to make an approval decision in February 2021. If it is approved, then the mutation testing will be included in their recommendations to the NHS.
Hope that helps!
Do you mind me asking where and how you had the testing done? I'm interested in having it done too.
Also, did you manage to access the drug? Thank you and best wishes.
Good to hear you are responding. I’m 5th or 6th line now...if they say no again, the plan is some more iv chemo over the winter and then hopefully start it in the spring. NICE are due to publish guidance on it in Feb 2021.
If I get my hands on it I will start a new thread to celebrate!
Hi Nicky thanks for reply, fingers crossed I can go on this treatment, just awaiting blood test results. Gosh rash sounded awful poor you , sounds like a plan us starting up thread . At hospital Thursday, so might know a bit more then xx
i started alpelisib at the end of June. I was fine for about 10 days then came out with a horrendous rash which was classed as Grade 3 which was pretty bad. I had to stop alpelisib for 10 days and put on high dosage steroids to calm it all down. I restarted the drug but suffered from awful itching later that day for about 24 hours but didn’t get the rash. I stopped it again for about 3 days before starting again on the slightly lower dose of 250mg per day plus masses of anti histamines. I have weaned myself off the antihistamines and now have no side effects, or none that are needing further medications. I have been given a blood glucose monitor as that is also a big side effect (for about 50% of the trial population) but my levels are completely normal. The other major SE is diarrhoea, again affecting about 50% of the trial population, but fingers crossed that hasn’t got me yet! Just giving you some information about what to expect.
In all I’ve been on it 2 and a half months but with a few gaps in between. My last scan showed about 25% improvement with my liver mets and tumour markers have continued to fall substantially so it is something that is working for me at present.
If eventually you also start on this drug, and hopefully so does BecksD we can start up an identifiable thread in the Treatments section as this current, shared information is rather hidden away in this thread.
Hi Nicky am hoping to go on Alpelisib when it becomes available to me .They are just confirming I have PIK3CA. At the moment on Exemestane/Everolimus.How are you getting on with new drug , and how many months have u been taking it xx
Sorry you find yourself in a similar position to me. I don’t know about the wording of the request that my oncologist sent but he basically wrote to all of the pharma companies about all the inhibitors, both the CDK and PIKc3a ones as I have mutations to both genes. He didn’t think he’d get any positive replies but did from Novartis (for Apelisib) and one of the others for a CDK inhibitor. It has been given to me on compassionate grounds (which I had heard of in the past). It might be because of the number of treatments that I’ve now exhausted due to the number of years I’ve been living with SBC. Maybe if you’ve not had quite so many the company feels there are other options available? I’m currently on about line 10 or 11 of treatment.
Im really sorry I can’t be of more help, I know how difficult this is. I hope you get some other angle that you can explore or try again?
Hope you don’t mind me asking some questions about access to Alpelisib. I paid for private testing that identified a PIKc3a mutation. My Oncologist applied to the drug company on my behalf but was refused.
How long have you been on it? Do you know how the request was worded?
I am running out of options and more chemo is the only alternative.
Any tips would be appreciated!
Hi ladies. I've had the 1st chemo and tried the cold cap. That went well I think. That was on Monday. Tuesday and Wednesday were very sleepy days. I wasnt sick or anything just could sleep for England. Today I feel more like me again. So I hope this will be how its going to be. But I'm prepared for worse to come as time goes on. My treatment is for 11 weeks.
Hope all is ok with you all. Take care,
I realise I didn't reply about the funding/access to drugs in the UK. We used to have the Cancer Drugs Fund which did allow certain drugs to be funded by our NHS in special circumstances on an individual patient by patient basis however this was stopped a few years back. There is a new version of this but Alpelisib isn't on it so there is no way of appealing to our deciding body (NICE) about them funding it. It is very expensive from what I've read, far more so then a lot of the other inhibitor drugs, especially the CDK ones that are now used in first line SBC treatments. My oncologist wrote to the drugs companies and they do sometimes offer the drugs on compassionate grounds. I think I had a good case as I have a strong mutation of the PI3K gene, which may help the company in their own ongoing research, and help them put forward their own case if eventually this drug is to be used in the UK.
Sorry for the delay in replying to your post - the past two weeks ran away from me!
How is your treatment going? I am glad you were able to make an informed decision and I hope its all going well for you xx
Hi Jennie, I’ve only just seen your post ( got a puppy and being kept very busy!!)
sorry to hear that you have to change treatment due to slight increase in liver mets, you were doing really well on Fulvestrant and Ribociclib too!!
Good luck with your new treatment.
Hi Nicky, thanks for your detail clarification. Hope more patients on this forum can benefit by reading your post. That is also the purpose of my initial post. 😁😁😁 Canada has the drugs special access program, which made me wonder if you access the drug through a similar program in UK. I understand in a clinical trial they have to limit the trial drug must be the participant's first treatment to ensure the outcome would not be affected by previous treatment. But I don't understand why some of the target drugs are limited to first line treatment only. ie. CDK inhibitors, Atezolizumib. In those "patient paid" countries, as long as a patient meets the physical criteria (ie. health condition, condition that the drug targets for) no matter at what stage, they can be considered for accessing (if they can afford). Maybe "Cost and Benefit" for us !
You must have read one of my other posts as I don't seem to have mentioned this treatment on this thread - which may confuse some readers!
However, you are correct, I am getting this treatment but in a roundabout way. As in Canada in general we don't privately fund our cancer treatment, although if we do have private medical insurance it can mean that treatments are available that you can't get on the NHS. Unfortunately the NHS (or their advisory body NICE) doesn't fund the use of the CDK inhibitors past the first line of treatment for secondary BC. Because I'm about 8-9 lines down the road having been treated since 2008 I am not able to have them. This is one of the criteria for acceptance on the trial for Alpelisib. However my current oncologist has been very proactive and he wrote to all the pharmaceutical companies (who produce these class of inhibitors - CDK and PI3K) as we know I have both mutations, to see if they would fund it themselves. Although we hadn't expected a positive reply the company that make and license Alpelisib wrote back to say they would fund it. I have read all about the SEs, the company has a good patient information part on their website, plus have read the trial conclusions. The rash is being treated but the medication has been stopped until the rash has calmed enough. All in all a challenging time however early indications show my tumour markers are dropping so fingers crossed I can get back onto it.
Thanks for sending the information though, it is useful for others to know about but unfortunately from what I know the drug will only be available within a trial scenario for some time as it's far more costly than the CDK inhibitors which are now being used and it limited to people with the mutation to their PI3K gene so would only benefit them.
Hi , I wish the new treatments can be approved faster in Canada but the fact Canada is far behind UK. Any new treatment is first approved at national level then down to provincial level which always take another 1 to 2 years. Besides, we do not have private. ☹️
By the way, the phrase II trial for PIK3 target drug (Alpelisib) is opened for recruiting in England (BC Canada not yet)
Hi Nicky , maybe you are currently on this treatment. By reading the information on the HK website (the patients have to pay so faster assessment), rash happened to 50% of the patients in clinical. Tablet of 50 mg, 150mg, 200mg are provided. Dose reduction is allowed when grade 3 (by mapping your description to the HK website description) rash (2x150mg->1x50mg,1x200mg->1x200mg).
Another new treatment which is opened for recruiting in England. (no information at all in BC Canada)
Thanks. Yes I've been thinking about a port. I'm going to just put that bit at the back of my mind now and wait until Monday. I've researched both. As I always believe knowledge is power xx
I didn't have chemo with my primary and have often wondered if I should have (but I'll never know).
Like Nicky08, I wonder if I should have thrown 'everything at it'
? but, also like Nicky08, I have mostly met women who did have chemo for their primary and it came back anyway. It's pants, whichever way you look at it.
At the time I was not considered high risk and, quite frankly, wanted the treatment over and done with.
Once the Secondary treatment started in May one of the nurses asked me if I would consider a Picc Line - (good job I already had done research and decided that if I had to, that I would choose a Portacath instead) . He wrote it down but I got the feeling they preferred to put Picc Lines in? Might be wrong.
Anyway, I have good veins which are holding up. I have noticed, however, that they are shrinking back, and eleven sessions into Paxlitaxel, I have to have my hand soaked in hot water before chemo begins 😕. I guess the veins don't like what's coming.
Hope this helps,
Thanks Nicky once again for your amazing knowledge and understanding.
I've been having bloods taken for 8months every mth. I know that's different to chemo but it's done by the same nurse and she always says she loves my vein. So hopefully the chemo nurses will be happy too. X
Just adding a bit here, observations and my experience etc.
In the UK H and P have to be given by IV- or at least until NICE decide otherwise. Drugs are approved on the nhs based on what the trial conditions were and H and P were given as IV drugs because, at the time the subcutaneous Herceptin had also not been approved. It is now so I expect at some point Pertuzamab will also be subcutaneous however we are often behind US and Canada for drug approvals or changes in their administration.
I also didn’t need chemo after my primary due to a very slight risk of it coming back. It used to worry me that I hadn’t thrown everything at it at the early stage but since joining the forum I have seen many women who did have chemo with primary still go on to get secondaries. I’m sure in the future when all of the BC genomes are checked for each patient it will be known what causes BC to come out of remission (after all that is all it is, there is no cure yet) and therefore which patients should have chemo at primary diagnosis even though their current perceived risk is minimal of it coming back. At the moment we all basically get the same treatments based on our receptor status and our treatment decided on by a statistical judgment of the likelihood of it returning. This will, in time become more tailored as the scientists discover more.
Regarding a PICC line I’m not sure why it will have been decided on before you start treatment if your veins haven’t been assessed. I only had chemo through a cannula during FEC chemo 12 years ago although that totally ruined my veins as it’s such a harsh chemo and is known for it. I have since had a port (portacath) fitted for any subsequent IV chemo and wanted this due to its lack of intrusion on everyday life. It’s under the skin and can remain in place for years, I’ve had mine over 7 now. If it’s not being used because I’m on a hormone tablet or injection it just needs flushing every 6 weeks. A PICC line needs flushing every week however as it will be used each week for chemo it doesn’t mean any extra trips to hospital which is probably why it’s been suggested. However it does need to be kept in your arm and tucked away whilst not being used plus kept dry. Worth just asking maybe when you go to for the first infusion as the chemo nurses know what they are looking for when it comes to ‘good’ or ‘bad’ veins - mine is distinctly bad (and I mean that singularly as I only have one good vein left to use on the arm they need to use!) They could decide your veins are good to go!
Good luck all with continuing or new treatments.
Morning Angel eyes,
Not sure why they want a picc line but the first on Monday will be into vein so maybe they will reconsider. I'd prefer not to have one. Or have one when they think its needed.
On primary cancer I was told I was borderline and so chemo my choice. It was hard at the time, but they thought there was only a 3% chance of it coming back. Well that sounded good but look at me now.
Oh well we are where we are.
Take care. Great to be in touch with you xx
oh no... just aware FDA has approved the Herceptin+Purjeta combo injection. I am a needle phobia...
Hi , I am triple positive. Was diagnosed in Aug 2018. Started with 8 cycles of 3 weekly paclitaxol+herceptin+purjeta, after then ,continue with H/P up to now. Last week just received my 31st cycle of H&P.
After 6th cycle, I found my vein was recovered a bit longer than 3 weeks. One time my nurse tried the vein under my thumb. My veins were good. Usually 1 attempt but this time 3 attempts. So painful... I decided the chemo port after my onco told me PICC line last for months but chemo port last for years. Since then, faster and easier to get my blood though I am still a needle phobia.
** ps I am no medical.
Hi Angel eyes, seems you are triple + by reading your previous posts. Not sure if your 18 weeks scheme means only the weeks on THP or HP.
Hi Jennie60, I am no medical but I think your onco has chosen the best option for you. 😊 taxol vs cape. If remember correctly, my onco once told me the first line chemo is usually having a better ??performance rate?? (something like that, can't remember the exact term) statistics from the clinical research. By the way, before you decide whether PICC or port or vein, maybe you want to check with your onco what is your next treatment after the 18 weeks. Back to hormone?? continue with the weekly treatment ??
This sounds good.
Sounds like your veins can cope and it's only nine weeks. It will fly by. I did wonder why a Picc Line had been recommended for you.
I'm eleven weeks into am eighteen week stint.
This is my first chemo too. What happened to us that we didn't have it before? 😐 x
Thanks. I've watched a you tube video I think picc lines are doable. Its my first chemo too. I think the nurse may see my veins and say it's ok to use them. She asked on the phone if my veins were bad and I said no and she seemed surprised oncologist had requested it. Often Ive found the power of nurses fantastic x
Glad to hear you are a bit more cheered.
Don't know much about Picc Lines. I did not have chemo with my primary so am using my veins. Do you think you really need it?
I hope Paxlitaxel is good for you. My hair has thinned out but I don't mind this. For me, using the cold cap is worth it. Do keep in touch.
Angel Eyes x
Also the oncologist is recommending a picc line. I have good veins but only one arm to offer as the other had lymphedema 2 yrs ago but doesn't cause me problem. Thoughts on picc lines please. Another thing to think about x
Hi Angel eyes I've just re read your reply from the other day. I e seen the oncologist today and made the decision to be on the same chemo as you. He feels it's the best treatment for me at the min. I will start in 2 weeks then it will be for 9 weeks, once a week. I'm hoping as you have said the side effects will be few and that If I wear a cold cap i may keep some hair. Good luck with your treatment. Xx
Thank you ladies, thank goodness for this forum. I have been told to think about and research the different chemo meds. Which I have done, but personal experience means much more. I'm going to mention biopsy. I had a liver biopsy at the start but am aware things change. Given the choice Cape sounds more suited to me and in present times with Covid the option that may be easier to access. I will tell the oncologist this on Monday but hope he will advise about the best one for beating back the cancer. Take care. Stay safe xx
I have liver mets and have had Capecitabine as well as docetaxel (which is the same family as paclitaxel, taxanes but given 3 weekly) - at different times in my 12 years with mets. Both were effective. I had Capecitabine when liver mets were first diagnosed and found it an easier option than going from hormonal treatment to IV (if I’d had a different chemo). I didn’t like taking daily tablets and it took my body a couple of cycles to settle into the new regime but generally tolerated well, as most people seem to. There was no discernible hair loss whereas with pacitaxel you would lose your hair unless you used the cold cap. I also didn’t have any problems with my white blood cell count although some ladies have had (not many from what I’ve read on here) but do get low counts on IV chemo.
One thing worth asking about is a biopsy of the liver lesion (if it’s in a suitably accessible area) because it isn’t acting the same as your other mets. I have had them on different occasions and it can show up a different receptor status - for future treatments.
ps I see Angel Eyes was replying at the same time so I have duplicated a bit although she has given her experience of pacitaxel. Thanks for the shout out!
I'm currently having low dose Paxlitaxel and am eleven weeks into an eighteen week stint. I have other treatments (H&P and Denosumab) because of my bones and HER-2 status).
In terms of side effects, I've had hardly any. I wear the cold cap and my hair has thinned a bit on top but it's okay - I was prepared for that and to me, it makes cold-capping worth it.
I think I was given Paxlitaxel instead of Docetaxel because I presented with such a poor performance status.
I'm not sure if one chemo is better than another for liver mets? but I stand to be corrected. I don't know if it is a case of 'the stronger the chemo the better', (which I know is in the popular nind'?)
One more thing: have you thought about being re-biopsied?
The wonderful Nicky08 put me onto this idea with her wealth of experience.
Maybe the stubborn liver met has a different receptor status? Just an idea before you jump into treatment?
Thankyou that sounds encouraging. May I ask if your mets are in your liver? It seems I've got to think about the best ones for my liver x
Sorry to hear about the slight increase in the liver met, what a little pest! Its a pain when there's one met that wants to rebel against the treatment when everything else is going so smoothly.
I started Capecitabine in June. Its an oral chemotherapy tablet and I think its pretty decent! I was told it comes with all the usual side effects that most cancer meds do, eg. tiredness/fatigue, low blood counts, diarrhoea or nausea, mouth sores etc but I am very happy to say I've not had hardly any side effects at all other than tiredness (which got a bit worse on my week off), and low blood counts which went borderline for being neutropenic.
Never had Paclitaxel but I have read lots of people have, I'm sure someone here can relay their experience for you. Good luck on your next step of treatment! xx
Hi ladies Ive been on kisquali and fulvestant injections for 8 mts and no side effects. All good really. Ct scan results today show reduction in lung and chest nodes but increase in one met in my liver. Have to change to some kind of chemo. Paclipaxel and Cape have been mentioned. I've got to go on Monday to discuss options. Has anyone had experience of these? X