Immunatherapy - Palbociclib

Hi Jodieb    Well i started on Tuesday and so far i feel great, i am a bit scared to say to much as i know its early days and maybe it takes a few days to get into your system. I was worried i might start to feel unwell straight away because when i unpacked all my medication there were anti sickness pills but i feel no different yet so fingers crossed.I hope it all goes well for you too keep safe take care xx

Hi,

After 7 months on medication, I feel the side effects have kicked in a little- however I am unsure what is causing what- it’s very difficult to tell so will probably matter what combination everyone is on and I know everyone is different and will react differently. I’m on zoladex, palbo, letrozole and denusomab with pain killers, anti inflammatories and vitamin D/Calcium thrown in there for good measure! I find I do have pain where my cancer is in spine and pelvic areas and I’m unsure if there are extra aches in there because of medication- I have achy, stiff legs upon waking or staying still for periods. I try to go for a walk everyday which seems to help. I find the hot flushes the worst as they drain me and make me sweat a lot and my hair has definitely thinned (I notice but other people don’t) and my scalp hurts at times when I move my hair. I don’t feel unwell/sick exactly- I too have anti sickness medication and i take one every morning with the palbo- I could prob try to not take it. I’ve not been exactly tired but have a lack of energy if that makes sense- because my white blood cells were low for the first time last month they lowered my palbo dose from 125 to 100 and this seems to have helped my energy levels a little ( tiredness could also be due to staying in the house during lockdown and getting used to not doing very much!?!). My nails/finger tips were quite dry but I found using almond oil and cuticle oil helped and basically filing my nails every few days and taking better care of them helped too. My skin, I feel is quite sensitive to the sun and will burn easier causing my skin to itch and then I come out in a wee red rash mainly on my chest and neck where I’ve scratched so I use a high factor if out in it on sunny days- I still use all my normal skin care/hair care and make up products though. Those are the main side effects for me but a lot only kicked in months down the line and remember everyone is different so you may not have any of these or something different! It really is very difficult to distinguish what drug is causing what side effects but I do feel less sore and have less hot flushes when I am relaxed so have been trying meditations and want to try some yoga. A hot flush and a bit of pelvic pain has woken me up which is why I’m typing this now! I feel a hot water bottle helps my aches and pains.

My oncologist just said all was stable from my last scan meaning there was nothing new showing anywhere and there was some healing of the bones in spine. I have a bone scan and a CT scan next week to see how things are so will know more when I get those results. Fingers crossed for good news. 

I hope this helps a little and I hope it’s not too much information- I have bad days and better days emotionally and I feel that my pain changes with my emotions. I took 6 months off work as a depute head of a primary school but I went back to work 2 months ago (working from home) so I’m working from home until the time I can’t anymore but will cross that bridge when I get to it depending on how things are going and how I’m feeling. I’ve found that thinking too much about the future and worrying doesn’t help so I’ve learned to break my thoughts into stages and live more in the present although it’s not always easy as I’m a strategic and forward thinker lol but hey ho! I’ve also been writing my feelings down if I’m really struggling and I try to hide my emotions from family and friends as I feel like a moaning myrtle and I don’t want to constantly be that as I fear people will get fed up- I get fed up and my emotions are very draining! Reading the positive posts really help though! Sorry I’ve rambled on a bit! 

Hope all is going well on the treatments and long may that continue! I know this is a long post but the short version is I’m still living everyday and getting on with things on these drugs and I’m slowly trying to get used to any side effects! 

Hello

Hoe are you doing.  Hope you are not feeling too bad with the medication.  I start mines tomorrow when I get them from Macmillan Centre,  Feeling so anxious tonight and just tomorrow to be over with.  

Sending you positive and caring thoughts xx

Hello, I think you are doing amazing and was very interested in reading your post.  You sound determined.

I have had a bad day today emotionally but still working (from home) as I find it gives me a bit of  normality. 

I can sometimes think too far ahead and then tell myself to just chill.  

I was thinking of taking up yoga ‍♂️ to help me relax.  

Stay strong and keep in touch 

xx

Hi Jo6  I have read your last post a few times now, and i want to say thank you. In my case its definitely not to much information. Having just started palbo last week i am interested to hear how other people manage it. I am also taking letrozole, lansoprazole, ibandronic acid, Adcal D3  at the moment i am feeling very well ( and long may it last ) I am expecting side effects like yours to come further down the line , i thought in about 4 to 6 months when you have a collection of the drugs in your system.I have not taken any sickness pills yet i thought i would wait and see how things go, but i am aware i might need them in the future. I didnt know you have it in your spine too like me, its easier to say which bones are not effected in body by cancer than those that are but still upwards and onwards as they say.The only saving grace for me is i dont have the hot flashes as i had them last time i had chemo in 2004 and i am well past menopause age now. I was pleased to read though that the last scan showed improvement i bet you were pleased i know i would be and probably celebrate with a cake lol. Please let us know the results of your next one and i have my fingers crossed for more good news.I am not working at the moment and wont be for some time it seems i am a cleaner in peoples homes, and because being in the vunerable group i can,t see me going back any time soon.I know what you mean by sounding like a moaning myrtle i feel the same ( i have not heard moaning myrtle for some time it was a favourite saying of my moms it brought back a lot of memories today ) i dont want my family to worry either so dont always say how i feel.On a brighter note i have been looking into yoga for beginners, and joining a over 60 keep fit group when all this is over nothing to strenuous as i have got to be careful with my spine as i have it in 3 places there.It was lovely to hear from you and thanks again for the insight you take care and keep safe i am always here if you need a chat xx

Hi- thanks- I hope it wasn’t too much information - think I got carried away at that time of the morning and really wanted to chat to someone! This is still new to me as well. Emotional days are hard and exhausting I know but then there are better days- they do come when you feel more positive and a little sunshine peeps through. Try not to be too anxious- having treatment and starting it is good news and as others have said, its not curable.. yet ...but it’s treatable and these new drugs are very good and we are lucky to have them! I know it’s hard going at first with all the appointments and the uncertainty of everything and my mind went into overdrive thinking about everything! I found it hard as I felt and still feel that others just don’t understand because I look fine but we are here for each other so feel free to ask anything. Hope the appointments and starting the drugs go well xx

Hi wino

Lovely to hear from you. I don’t read a lot about any side effects (unless I’m looking in the wrong place!) and the hot flushes I do find very difficult on top of everything else- I feel like punching my body sometimes and telling it to stop harassing me lol! Yes mine is in spine, pelvis, arm, sternum and a few other of the pelvic areas- all very small but grew slightly bigger in between scans before I started treatment. I have joined a zoom meditation group 2 nights a week which I actually find quite hard to sit still and to concentrate on my breathing for 40 minutes- nearly fell off my bed half asleep last night lol and my mind wanders too much but I’m really trying to relax my body! I haven’t taken the anti sickness in 3 days now and I don’t feel sick so I’m going to stop taking them as that’s one less pill to rattle round! I hope the yoga goes well and you enjoy! Thanks -always here too x

Hi Jodieb, I was diagnosed with MBC in October 2019 10 years after the initial cancer.  I have mets in both lungs and liver. I started Palbo in February. Started on 125mg but my white cell count was low on 2 occasions so they dropped the dose to 100mg.  My scan in April was really positive and showed a reduction in the number of tumours in all areas. The only side effect I get is fatigue but I also gave m.e. So it's sometimes difficult to know which is which.  On the whoke though it's not a problem, I get more fatigued in the 3rd week of the drug and then return to normal on my week off.  I'm on another site too and been researching anything I can do to get the best outcome whilst on Palbo.  I used to take my tablets in the morning but changed last time to taking it with my evening meal as it apparently works best with a full meal and some folk find the fatigue is better as the initial impact is overnight when your sleeping anyway! .  I knew to avoid grapefruit but have recently found out from pharmacy that pomegranate and Seville oranges (marmalade) have the same negative interaction as grapefruit so avoid them too. I've also increased my intake of vit B12 via eggs, cheese, milk etc. My bloods today had come back up to 1.23 which is really good for me so I think these measures have all helped.     It's hard and scary setting out on this journey but there are many positive stories out there and with so many advances I am looking at this now as a long term chronic condition to manage.  I wish you all the best and know you're not alone in this so feel free to contact any of us  xx

Great email and has certainly made me feel more positive.  As you say it is treatable and that is what I am holding onto.  You are like e in that my mind when into overdrive so it is good to have posts like these.  Makes me realise that we have the same thoughts.

take care and keen in touch. Xx

I to am on the same meds combination since January and thankfully tolerate the combo really well. Weight gain and hair loss probably my main whinge. Interesting to read your sore scalp as just the past few weeks Iv noticed this as if Iv worn my hair in a bun to tight. Weird. I did mention at my latest appointment bout hair loss when brushing and seemingly there was medication to combat this in the past but caused unwanted excessive facial hair so think ill be coping as it is Thankyou . I to find meds after breakfast helps. Looking forward to getting back to work when we are able due to shielding. I’m more than ready .

take care 

jo