I now know that on the trial I decided to be on, I’ve I’ve been alloted piqray with fulvestrant shots.
I had my two first ever fulvestrant injections! Wow. They hurt. But nurse put ice packs on before. And also after. What a new onslaught to my system. Here we go. I never knew the ibrance and Anastrozole with monthly Denocumab ride was so easy.
Today was my second day on new meds and apart from exceptionally tired…I’m not feeling too bad. A little headachy and ever so slightly nauseous.
Sending love to all of you out there who are on a similar journey. ❤️❤️❤️
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Timtam56
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hello Timtam…your post echoed my thoughts exactly! I’m so sorry that the fulvestrant was painful…after all the crap we have to go through on a daily basis now you get to look forward to this injection monthly. And you’re so right that IBrance seemed like a walk in the park compared to the unknowns one faces when trying a new med. I do wish you all the best…and I pray this regimen works for you for a long time. There should be an oral version of fulvestrant available soon…right?
I’ll be following your journey closely…know that there are many of us thinking of you. Many of the ladies here can give you some helpful info on how to minimize the discomfort of the shots …🤞🙌🙌❤️🩹
Many of us have posted here several times what to do to make the fulvestrant injections less painful. I will list here the ones I used that really helped, and there are others I don't remember.
1. The stuff has to be warmed up before it is injected. I used to put the vials between my thighs or under my arms. It is refrigerated and then taken out a half hour or 45 minutes before injected, but if it is warmer, it flows more easily and hurts less.
2. The injection must be slow. Hurts more if they try to force it. Each one should take at least a minute.
3. They should be given in the hip, not the butt (risk of hitting sciatic nerve). It also hurts less if injected more toward the hip than the back. (I had to bring an article from a nursing journal with a diagram to convince the nurses.)
Others had additional strategies -- they used warmth afterwards, not cold.
Great advice for the fulvestrant shots . I'll add that if you hold on to a countertop and take your weight off the side receiving the shot , it is less painful (the muscle is relaxed which seems to help ).
These have become less painful for me over the years. Honestly , I don't really feel them now .
Ohh I hope I get a bit of time from it my Tammy cousin! I feel like maybe I will considering this morning I’ve woken up it’s the third day and I think I’m feeling a little bit better even though I didn’t get great sleep last night because I slept so much during the day yesterday. So I’ll try not to sleep too much today and see how I go tonight. And if it hasn’t had an adverse reaction by now, maybe I will not have too much trouble hopefully!
When I started treatment, I was in bad shape. Could hardly walk, certainly not uphill or carrying anything. I started Ibrance immediately, and Fulvestrant the next day. The nurse who injected the fulvestrant (we did it with one knee on chair) told me "My medicine works. You are going to feel better right away." She was wrong. It took three days, and then I could run uphill. (Of course, I did that, tripped and broke my knee.) I got two years out of it and it was so easy.
I recommend having the fulvestrant injections administered while lying on your side. The infusion chairs can be reclined all the way back allowing you to lie across it. Standing up during the injection makes it more painful because the muscle is in use. The nurses are trained to make the patients stand because it’s more convenient for them. If you insist on a more patient oriented method, they will accommodate your needs.
I also concur with having a warmed, slowly administered shot.
Best of luck in negotiating these details with your care team!
hi Tim tam- being on a trial is so hopeful! I echo that the fulvestrant shots get easier over time. But a moment of pain and then Thr side effects were not much for which I was always grateful.. wishing you so much success for a long run of this!
Hi Timtam. Thank you for the update. I'm sorry that the injections were painful but they will get easier and after you get the second loading dose set of two in 2 weeks you will only need to endure them monthly. I read more on the Capture trial and it should be a good one for you as it gives you a way to receive the Piqray which otherwise in your government system isn't yet approved and leaves Xeloda for future for you. Since both drugs that you are receiving are widely used I don't think the trial will be that intrusive to your time....it's basically being done so that the researcher can prove that there is a need for this combo in the medical system there. I'm Canadian so I understand and I also have the PIK3CA mutation but would never have the access to Piqray unless in a trial.
I certainly am routing for you and will be following your progress so please keep us posted as you are able. Let's hope these drugs kick your cancer cells to the curb and bring back a better quality of life for you and less pain. Take care.
Thank you so much Miss awesome. Day 4 after starting trial today, and I’m feeling okay except I nearly fell over with dizziness yesterday I’ve been anaemic for a long time. I rang the trial nurse they’re going to try and get me a blood transfusion today or tomorrow. Other than that I’m feeling okay.
Hi Timtam. Being anemic is no fun on it's own and especially when you are starting a new trial of drugs. Hopefully they will be able to arrange a blood transfusion of at least 2 units sooner as opposed to later and then you will feel more like yourself hopefully. Having you fall should be very concerning to them as I know you have bone mets. I will keep you in my thoughts and be following your updates. Take care.
Thank you so much. I have been given an appointment for Monday. It’s a 3 hour appointment. Would that be long enough for 2 units? Not that I understand this so much! 🤣🙈🙈🙈
So glad you have an appointment! Typically each unit of blood should be infused in no less than 2 hours. They infuse slow for the first 15 minutes to make sure you don't react and then increase the rate on the machine. With a 3 hour time slot allowing some general admission stuff and IV start it sounds like they are planning one unit. That should help some though. Keep us posted.
Thank you. I feel so awful anything has to better than this. I just keep going from the bed to the lounge room, the bed to the lounge room lying down all day long. It’s been like this for I don’t know how many months.
Sorry my friend. Since you are coming off Ibrance which caused low blood counts and now onto Piqray which causes the same side effect and add the anemia and your body probably feels like it's been assaulted. Make sure to take slow safe movements and add a cane if you need additional stability. Hopefully in a few weeks you will feel so much better. That's my hope for you. Take care.
Sorry that I didn’t let you know Miss Awesome. I got to the hospital last Monday and they told me I didn’t need a transfusion. What had happened is within a week I’ve gone from a haemoglobin level of 90 up to 100. So not anaemic enough any more to have a blood transfusion.. so I asked them why the hell was I feeling like SHITE?!?!? They gave me no answers. I’m still feeling like SHITE. Today is Saturday I go on Monday for my next fasting blood tests. My mouth is so dry. I have an insatiable thirst. I’ve got spots all over my body. Refer to my newest post just a few minutes ago. With a terrible picture of my back, I’m sorry to say.
Anyway, I don’t know what they’ll do with me. Even though Australian is a great place to be with having a disease like Cancer. We have some of the best hospitals, the best researchers, the best healthcare system, I get everything for nothing. It’s quite incredible. But I have to say I don’t know how much trust I have in anyone to care about me at all much. And that is a sorry state to be in. But it’s my truth.
Thank you so much for asking, and caring about me, Miss Awesome.
I am so sorry you found the injection painful. I've read others posts before who said they find them painful and I wonder why. I agree with Tammy above about warming the mix up, I get it out my fridge an hour before injection, but on the insert in my packet it says to give each one over 2 minutes so the nurse puts her timer on her phone. I have never had severe pain on injection. I lie down and just swap sides, squeeze hubbys hand til his finger bones break, he doesn't seem to mind!!!!!!!!!!! Maybe the squeezing takes my mind of my butt.
Thank you for that info. Even though the hospital I go to is incredibly wonderful., I did find the nurses difficult to speak to about the warming up in the slow injecting. But I still think it probably wasn’t as bad as it could’ve been. And you just have to put up with the nurses you have at the time don’t you?
I am so lucky here in NZ. We go to our GPs practice for our jabs, well I do in South Canterbury, and I got to pick which nurse. My first nurse was good but then she left and I worried about changing as we do about anything that changes on this journey. But the second nurse turned out to be better than the first. I think older nurses are better at IM injections as the newer nurses just don't get the practice we had. When I was training I could give up to 10 IMs a day, its a skill you don't lose.
hi TimTam, all the best with the trial! Heat, not ice! Like others said, warm up the syringes first, stand with weight off leg or lie down (the kneeling position is the worst!!). Heat pack afterwards. Massage the lump you will probably feel, it helps disperse it. Also practise some squats or stair climbing soon after the injections to get those glute muscles firing and add to dispersing the gel.
Yeah make sure they go slow with the injection, vital. And if you get itchy at the injection sites like I use to, then take an antihistamine, that helps a LOT.
Make sure you’re keeping well hydrated to help combat the fatigue too!
Hello lovely. I am glad you got on the piqray and fulvestrant (Capture trial). The jabs get easier fortunately. I found the piqray to be tolerable. Do you have to monitor your blood sugars? I just did mine in the morning before breakfast. I pricked my fingers from the side not the tip as suggested by my nurse. Heals better.
You are in my thoughts and prayers. The weather is so warm, apparently we are having a few hotter days coming up. I am in NSW . Keep hydrated lovely 🩷🩷
Oh okay. I feel that considering the hospital I’m at is such a big amazing research centre for Cancer. It should be better than it is because… I don’t know how to explain …it but even though they’re really really good, and as a patient of 5 1/2 years on ibrance and anastrozole, I feel I’ve been pushed to the side in a lot of ways.
I certainly feel like that for the last 2 or 3 months I’ve been anaemic. Yesterday I went to stand up and nearly fell over. I’m feeling really dizzy and awkward and tired, and not good on my feet. I rang the trial nurse and they’re going to try and get me a transfusion today or tomorrow. But the trial nurse told me she’d get the oncologist to read my results to check out my anaemia. I’m shocked that I had to alert them to my anaemia, just because my other oncologist isn’t always there for me on the !!! Read disappointed, almost angry!!!
Oh Timtam 56 I am so sorry, that's not good at all and you have every right to be angry.I am glad you got onto them and I do understand, they should have been onto it with your anaemia.
I feel how you feel about being pushed aside, I have felt that often with my treatments. I hope they can organise your blood transfusion quickly and I am thinking of you. They might have to change the dose if it's causing you dizziness. Do you have someone at home supporting you?
Thank you Cherry38, and I’m sorry you have to go through your treatment feeling like this too.
It’s hard enough not feeling great without having to put up with a broken system.
No I don’t have anyone to look after me. And it feels strange after having been a carer all my life for others….. and yet here I am now, alone. But it’s okay. I have to keep any disappointments pushed down or otherwise I will break. I have to keep strong, for me, for my own benefit. I am worth looking after myself. That’s what I always say.
You are so strong. You definitely worth looking after yourself. I am just having my first IV chemo right now, feel a bit worried but onwards and upwards. Sending big hugs and try and rest 🩷🩷
Hello lovely, how are you feeling? How is the dizziness. I hope you got your blood transfusion appointment.
I had a terrible time with my first IV chemo, I had an allergic reaction, so I was taken off it and pumped with this and that and ECG taken. Only in 20 minutes and my face and tongue went tingly and felt strange. My breathing was ok, but I got hives.
Anyway I had more meds last night and this morning and pumped with more pre meds again and a sedative and they finally got the doxorubicin in me.
But not the way they would normally as that was another problem not having a part to join to the pump.
They had it yesterday but none today in the whole hospital very strange.
So I was given it an old fashioned way through big syringes into my glucose bag anyway all done for 28 days.
Had a few side effects from my radiotherapy,my skin I just got good
has flaired up but I was told that could happen.
So back to the good old zinc and caster oil.
Hopefully not to many side effects.
I do hope you are feeling a bit better. These treatments are sent to try us and it's hard.
My dad unfortunately passed from prostrate cancer at 75 and he wanted quality of life, I couldn't understand why he would give up his treatment but I totally understand now.
He had a few happy months with my mum going back to places when they courted. Unfortunately I couldn't get home in time to say goodbye, I booked my tickets to the UK and he died that day. I was fortunate to see my mum, though when she passed 2016, she had a bad stroke but was dealing with breast cancer. Sad thing my parents were so healthy and cancer unfortunately in our family.
I just look at my beautiful teenagers and I have to keep going.
My oncologist has sent my new bone biopsy to Sydney so I will be hearing soon from them, for research as I want to go on another trial if possible.
Please take care and let us know how you are. Sending a big hug 🫂 xx
Sending you hugs and prayers and best wishes for good results with your new protocol. I love the suggestions on here about how to make the shots hurt less. Hope you do not experience any side effects and do well on this trial. We are rooting for you. Keep us posted on your progress.
I was on Piqraynand Fulvestrant for 14 months and did well ! Watch your blood sugar and ask for a prescription of Metformin or Jardiance to keep the glucose down. With the shots, lift up each leg as they administer it so as to not flex your hip muscle - makes it hurt more !
I have nothing to offer in regard to your new treatments, but will add my prayers and hopes that the days ahead get easier and you get longevity from this 💕
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