Just letrozole or start Ibrance - my decision apparently!!

[raraJ75]

Yes it was 4 from the start. 

I was diagnosed via a bad back at the end of August. I had spinal surgery and then started on letrozole. I then had a mastectomy in early October. I have not long finished radiotherapy to my spine and chest.  

I am due to start Ribociclib in Jan and also denosumbab which was delayed due to low vit D levels.  Lots to deal with!!!

[glovesareon]

Rara was yours 4 from start? What was initial treatment?

thanks in advance

[raraJ75]

It is a HUGE shock and one I still haven’t dealt with really! Once things start happening it is easier in a way.  It is the unknown that is so very hard to deal with!

It was the onc who was advocating for me to stay only on the letrozole but we agreed at my last appointment that I will start ribocilocilib in the new year.  He said I was in a small subset of people for whom it could be argued that it was beneficial to delay the CDK inhibitors but he was also happy to go ahead.

[glovesareon]

Hi 

I am exactly the same found following unrelated test bam straight to stage 4 awaiting to see onc to find out about treatment!! 

[GiulianaB]

they offered me Ibrance too. It is a very expensive drug, if they offered it to you is because they think it ll prolong your life.

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-breast-cancer-tre...

I am at the stage I am just too angry that it has taken them 4 years to diagnose me however I have accepted it. I will start it in the new year I did not want to be sick at Christmas I want them to repeat biopsy and do the per scan first.

[nicky08]

If you have been offered ibrance to add to the benefits of Letrozole I’d take it as it is a new drug not offered to all ladies with secondaries. I’d also say that in my experience (I’ve had mets for over 11 years now) that the longer you can keep off chemo for treatment the easier it is to lead a ‘normal’ life (whatever that is!). It enhances the Letrozole and, as you’ve said, prolongs progression free time. I don’t know of all the side effects of Ibrance  so hopefully someone else will come along and help with those, or check out another thread on it, I expect there’s one in the Treatments and medical Issues part. The Ibrance can always be taken off if you don’t tolerate the SEs.

[Buff]

ooh thank you. I will ask him about that new radiotherapy.

Ive heard of 'cement' being 'injected' into individual vertebrae but not the removal and replacement with metal cage thing you have. Good to know there are options if my many affected vertebrae succumb. You being pain free following surgery is just fantastic!!!! I think my onc was disappointed I was not pain free in my hip after insertion of inter (or maybe intra?) medullary nail a few weeks back. He too did rads to just blast what was left of my bone and I too just said ok. I posted yesterday about getting on top of what then became intolerable pain in my hip and thigh. Hearing you are pain free after your surgery gives me hope that the rads and Zolendronic acid may have produced short-term pain. Fingers crossed! x

[raraJ75]

Yes - it is a pain going to and from the hospital.  I am so glad it’s all over.

If I am honest I don’t really know why I had the rads to the spine.  I had a couple of spinal ops in September.  The main one removed one of my vertabrae which the tumor has pretty much destroyed and replaced it with a metal cage.  The onc just said he was doing the rads to what was left in that area. I just said OK! The pain was loads better after the op in any case. 

No harm in asking your onc at the next appointment. There is some super duper new type of radiotherapy (stereotactic????) which I couldn’t have due to the metal work but it supposed to be very effective?

[Buff]

oooh that's a lot of radiotheraoy. I had 25 to my chest when I had my primary 14 yrs ago and was shattered for quite a while. Just going back and forth to hosp is tiring! Maybe its different now though. 

I was wondering what the criteria was for having rads to bones. Did you have yours for pain? I was given rads to my fenur to reduce pain I think. Im bothered by pain in my skull and a rib right now. The pain in my spine is less bothersome. Wonderibg if rads mught help. 'll ask my onc at next appnt. 

[raraJ75]

Hi

Thanks for your message.  

It was actually the onc that wanted me to stay on the letrozole only.  I was keen for the Ibrance.  However I have met with him again and we have agreed that I will start Ribociclib in Jan.  I will be having denosumab  also in Jan as my vitamin D levels needed to come up. 

I have just finished 15 rads sessions to my chest and 5 to my spine so he wanted to wait a few weeks after that. 

[Buff]

Hi Rara,

I was diagnosed with widespread bone mets 3 mths ago after an unrelated chest CT scan. I had been having spells of severe pain in a rib and moderate pain in my groin/hip when walking I was started on letrozole straight away. Ibrance (palbociclib) and regular Zometa infusions (Zolendrinic acid a bone strengthening drug) were deferred pending assessment of hip and possible need for surgery to prevent future disability. I had surgery 7 wks ago to stabilise hip (a rod in thigh bone) due to being a hot-spot of wee blighters weakening the bone. I started on the Zometa and Ibrance a couple of weeks later, then 5 lots of radiotherapy to my hip/thigh.. 

The Letrozole seems to be my most important drug as will stop the cancer cells growing I think The Zometa seems important to strengthen and re-knit damaged bone. The Ibrance seems in the mix to try to shrink my mets as some are pressing on nerves. 

Im not sure if this will be of any interest at all but I shared it as another experience of the drugs you mentioned. In my 'primary' years I was offered a treatment that I decided not to take. My current oncologist would have told me to take, not offered it to me! My advice is to consider asking to see a different oncologist for a second opinion as to the Ibrance. 

[Kate21]

Hi Anniej, my Oncologist printed off information for me when we had the discussion, side effects were, as I remember, pretty much the same as Palbociclib (I’ve packed a lot of stuff away as having work done on my house so can’t check at the moment). Agree, side effects do vary greatly for everyone, and I’ve been very lucky so far, but think things would change on this combo if I went ahead with it in the future. Initially when I asked I was really happy I could have it but recently have read information from the US that these drugs can potentially leave you with a chronic lung condition, albeit quite rare, so will definitely be researching as much as I can about it before my next scan! I already take Ashwagandha and Astragalus, the latter I believe particularly helps with white cell counts which I understand can be a problem, (pretty sure I’ve read other posts about this on here). Kate x

[Anniej]

Hi Kate, were you told of any SE’s with that combo? At our support group meeting on Wednesday we were told about this quite new combo. A couple of members are scheduled to begin this treatment and our SBC lead advised of “galloping diarrhoea “. Forewarned is forearmed , although, as we all know, reactions can be very different. Hoping that this will be a great combo for you. X

[Kate21]

I was told by my Oncologist that I couldn’t have Palbociclib due to it only being approved for first line secondary treatment by NICE, and as I had been on Letrozole for two years when it was approved didn’t qualify, but did say I could have Abemaciclib along with Fulvestrant as treatment in the future.

[Stillhere]

Hi Rara, you've had a lot of treatment to get your head round so I hope that I can help a little as I'm my 7th year of secondaries.

The most important advice is to get clarification from your oncologist whether Palbociclib (Ibrance) could be added later if you chose.I think the NICE guidelines are that it is approved as a first line secondary treatment only. Many forum posters have been unable to access Ibrance for this reason. The guideline may have changed though.

The other thing is that there are 2 other similar drugs, Ribociclib and Abemaciclib, they all target the same pathway. Again, I'm not sure if they are approved in UK, best check.

I was on a clinical trial for over 3 years with Palbociclib and another targeted drug, worked so well for me. Yes, there are more side effects with Palbo, it can effect your blood counts but make sure you are clear how long the treatment is open to you xx

[Kate21]

Hi Rara,

I agree, having a mastectomy when you well diagnosed straight to stage 4 isn’t something you hear about! Regarding Ibrance, have you looked on the US site Inspire? There’s a lot more information about it on there as it’s been used for much longer than here in the UK.

Kate x

[raraJ75]

It is certainly s**te!!  Am hoping rads will be ok.  It’s such a pain having to traipse to the hospital every day isn’t it!

I am in an odd situation that assuming there is nothing new or in my arms and legs then I don’t have a tumor left for them to measure. I had one met in my spine which has been removed - I have a funky metal cage now! They also did a mastectomy so don’t have my primary either.  

We left my last meeting with him asking me to think abut things to discuss again after the rads. Will see what happens! 

Reading other people’s stories makes you realise how different we all are! 

[Anniej]

I’m sure you will manage the rads easily, but it is all sh*¥e , isn’t it? It will be your medical team decision once all your results are back, but it would be nice to have a clear picture of your treatment pathway. In the mean time, onward and upward. You’ve got this far. Hugs. X

[raraJ75]

Hi

Thanks for asking! Hope everyone else is doing ok. 

I have started radiotherapy to my spine today (5 sessions) and will have 15 sessions to chest at the end of the month.  Decision on drugs will take place after all that!  At the moment I am going to say I want it all now but want to hear again his reasoning for a delay. 

I have asked a few times for a bone scan as my arms and legs have never been scanned but there seems to be no hurry with that! I have some thigh pain but the nerves in the but of my spine that was damaged and they operated on are the ones linked to the thigh muscles so they have said it will be that.  

I will be getting Denosumab when my vit D levels get back up.  

I really do find dealing with the system very very frustrating at times.  It doesn’t help in dealing with all this rubbish cancer throws at us!  Some of my treatment is even private due to my husband’s work insurance! 

[Anniej]

Rara, have you pinned your Onco to the wall for that conversation yet? X

[Kindensurprise]

How are you getting on Rara?

[Liz0418]

I have been on letrozole and ibrance(palbociclib) since April 2018 for secondaries in lung pelvis and base of spine. Scans 3 monthly show 4 of 6 tumours smaller side effects manageable Take turmeric for joint pain and to help immunity. Only had 2 treatments delayed for a week due to low neutrophils. I'm on 125mgs which is highest dose. This drug has been available in Canada and America for 6 plus years with good results,I checked website. Sending love and know it's hard for u to decide but I am finding it manageable. Love and hugs Liz x

[avrelia]

Hi Rara, sorry that you have to face a making a decision, it is so difficult isnt it. I have almost the same problem now. May be the oncologist would like to have the stronger medicine for a later period, my always said that she would reserve the heavy archers for later as this is how she is going to run out of options later. However with everyone the cancer is different. I have been diagnozed in 2016 with secondaries in my bones. Have undergone EC chemoterapy and then Tamoxifen, which did not work long and letrozole, which failed after 2 years. Since June this year my onco is trying to find me something to control my disease which has spread into the liver as well. Two treatments fail so far. Now I am due to start another chemo this month. Have not decided which one yet though as it is very tough. Speak to your onco and see why they are inclined to wait. 

[raraJ75]

I am so pleased you are doing well and the SEs are manageable.  Xx

[raraJ75]

Hi Annie

You have echoed my thoughts. I am struggling to understand why NOT to do it.  Especially as they have done/will do so much in the way of local therapies.

Another conversation with oncologist definitely needed.  Why can they be on the end of the phone 24/7 ha ha 

[Anniej]

Hi Rara, you’ve had a bit of a rough time I think. Tough not being given the full picture which would help you make an informed choice. I was diagnosed in 2017 with 4 small lung mets. I was put onto Letrozole because....well, that’s the drug of choice for Er+, but I was told that often it only has a working life of 2 years. The cancer is very clever and will think of ways to get round the block, so it mutates. Palbociclib works with the Letrozole to extend that. So far I’m doing very well on it. I didn’t do well at first as my neutrophils kept crashing. I’m on a small dose with a longer rest period. I chose to take these drugs as I want to be around my husband for as long as possible, and of course my children and grandchildren. If the SEs mean my life is no longer enjoyable then I shall stop. Not yet though! 🤞Wishing you the very best. Whatever you decide has to be right for you. X

[raraJ75]

Hi Kinden

Hope you are doing ok.  It’s like being hit continuously with a massive brick isn’t it.  Good luck with getting your plan sorted. Hopefully things will move soon for you. 

I think palcilobab (sp??) is another name for Ibrance as well? I see the oncologist during the radiotherapy process so will talk again with him.  I feel like I want to pin him down on stuff. They can be so vague!!  

[Kindensurprise]

Hi raraJ75,

i have never heard of Ibrance, but for me I would throw everything at it to slow down progression. Others who have had it may say differently, and I am new at this secondaries thing having only been diagnosed 2 weeks ago and not having got going on any treatment yet. 

Maybe you could find out more about what the side effect might be before making a decision?

All the best whatever you decide.

Kinden x

[raraJ75]

Hi

i was diagnosed at the end of August straight to stage 4 with bone mets.  I have had my L3 vertabrae removed and replaced with a cage and rods put in above and below.  I have also had a mastectomy which I think is unusual??

They started me on zolodex and letrozole after the spine ops.

Oncologist is now planning radiotherapy to the spine and the chest/armpit (same as they do after a “normal” mastectomy).

He has said that it is basically now my decision if I stay on just the letrozole or if I have Ibrance (well he said a CDK inhibitor which I think is Ibrance??) now or wait for progression?

He seemed to be leaning towards waiting but I can’t see why that would be the best thing to do. They have been very aggressive thus far.  He said it improves progression free time but not necessarily how long I may live!!

Have others been faced with this decision? I have limited side effects on the letrozole so it is tempting to just be myself but if the Ibrance delays things then why not?? 

Thanks everyone