Next steps continued

[Julie2233]

An update on my post from 2 weeks ago

I saw the oncologist last Tuesday. He said that my ct scan had been reviewed and the lesion found on my liver was typical of a liver met so no further investigation was required and my treatment had to change.

I've had 17 cycles of faslodex and ibrance (125) and despite worries about headaches and a breast lump I have been feeling really well, almost back to my pre-diagnosis self and starting to let myself think of the future more positively.

When I saw the oncologist 2 weeks ago he told me that my only option now was intravenous taxol which I really wasn't happy about. But thanks to all you lovely ladies and your responses to my post, I went in with a typed list of 7 questions and asked him to work through them with me so I could understand why he was suggesting intravenous Taxol.

The up shot is that because of those questions he reviewed his treatment plan and has agreed to give me a 3 month trial of afinitor and aromisin. If after 3 months the ct scan shows progression then he will consider xeloda or taxol as the next step. But at least I will know we tried. If there is no progression I will stay in this regime until there is or the side effects become too severe.

I start the new treatment next week. I am worried because he's told me that it can cause lung issues. I've been susceptible to chest infections since I was a child so that may be an issue. Also, I've felt so well on the ibrance/faslodex combination, I'm worried about going back to feeling unwell. I keep telling myself that everyone reacts differently to the drugs, and there is no reason why I shouldn't be fine, but not sure I'm convincing myself.

I have realised that over the last 4 weeks the hot flushes have returned and are gradually increasing in number each day, and my skin and hair have become more greasy again. I wonder if this is to do with the liver. My cancer markers are still low, it will be interesting to see if they've increased when I have my bloods done next week.

Again, thank you everyone for giving me the information I needed to talk to the oncologist and get the treatment I wanted.

[Francesca10]

Hi Julie

I know the feeling of changing treatment. Was on faslodex and Ibrance’s caused so many issues. Now going on xeloda. I am scared about reactions/side effects. My body just allergic to ibrance. I wish you the best going forward. Only good results🙏🏻🙏🏻🙏🏻

[Julie2233 in reply to Francesca10]

I hope that xeloda suits you. One thing I've learnt from the posts on here is that everyone reacts differently to the drugs we are prescribed.

I loved being on ibrance and faslodex as I felt completely well and even the fatigue has reduced over the last 6 months. But no point in looking back need to look forward and hope the new drugs work and the side effects are bearable Here's to good results!

[MacroMom in reply to Julie2233]

You are so right about how differently we all respond! I think it's a good sign that you got 17 cycles out of Ibrance and felt so well on it. Your body is fighting! I love that you went in with questions and got answers and more options - a good example for us all to have confidence in influencing our journeys on this crazy path. I hope the A/A combo works well for you. I haven't had it myself but I've read a good bit about it here, I'm sure you'll get some good advice. Here's to not looking back and good results!

[Julie2233 in reply to MacroMom]

I used to just accept everything I was given by the oncologist without question. Until I realised that they don’t have the time to know me so they follow a pattern of what has worked for others before. Thanks to the information on this site I know understand enough to go in and have a discussion about treatment. I accept that they are the experts on treatment but i’m The expert on me 🙂

[mariootsi in reply to Julie2233]

Amen!

[Mindysooty]

Hi Julie. So pleased that your Onc listened to you and was willing to adjust his thinking to accommodate. I think a 3 month trial is fair and Im sure you yourself would want it to change again if there was progression. I bet you feel proud of yourself for successfully fighting your corner. I can imagine your nervousness around change of meds I think we probably all share the same anxiety around that. I try not to read about side effects as I start expecting them and I think you can subconsciously create them - if and when something occurs I deal with it. As you say we all respond very differently to everything, there's lots to factor in - diet, exercise, lifestyle etc. You never know, you may not have any or very minimal issues. Fingers crossed eh. I don't know if your greasy hair is liver related but hey, you have hair! Bonus 😆. Not making light I promise just trying to be cup half full for you. Ive been quite ill for a good few weeks and all my positivity just went. Was so down but starting to feel a bit better now and getting my mojo back. Very best of luck on your new regime. Keep us all posted. Best wishes.

Josie x

[Julie2233 in reply to Mindysooty]

Josie, you are so right! I still have hair! Thank you that made me laugh out loud 😊 Like you, i’ve Been struggling with positivity during the last couple of weeks which is why i’ve Been quiet, but feel so much better now I feel as though l’ve taken hold of the situation. And yes if this doesn’t work then I’ll be first in the queue for taxol 😊 Hope you continue to feel better. Glasses half full are so much better than glasses half empty! Jxx

[mariootsi in reply to Mindysooty]

Keep your mojo working Josie!

[kearnan in reply to Mindysooty]

I am of the same mindset as you. When given a new med, I have learned NOT to read up on it and the side effects because the mind is a powerful thing and you can start to feel or think you feel the same side effects. My onco who just recently switched me to verzenio only told me to expect to experience severe bouts of diarrhea and to load up on Imodium AD. So I live alone and don't drive, so I bought several boxes first. Never used them. I had severe, severe constipation for the first three weeks. I was NOT prepared for that. I think my onco just goes by the book on what the side effects will be. I have since read many other women had constipation first. So I try not to read too much otherwise I imagine I am feeling the side effects that I read about.

[Marieleb]

Morning Julie

Well done for making your case so strongly... I was also moved to the same combo as second line of treatment in July after less than a year on Ibrance. The Onc also mentioned the possible chest/ lung complications, she also explained that they have found that sticking with 5mg instead of increasing to 10mg decreased significantly the risk of complication so this is now their agreed protocol for all patients...

I also did well side effect wise on Ibrance and I am glad to report I had little side effect for the first cycle of Afinitor ( apart from the usual rotten " severe flu like symptoms" I get with for a couple of days with new treatment) and whilst I am having a very rough time right now I am pretty comfortable it is caused by increased dose of metformin as part of COC protocol and nothing to do with my conventional treatment.

I can't help on the 15- 3 markers as my medical team pays no attention to it but I too will be reviewed after 3 cycles with PET scan ( due 18th Sep with results on 25th) so will share those ( as always!)... Out of interest have you discussed alpelisib with your doc too ( for me this is " the one that got away" ) ?

Off course we never know how we will react to treatment but you need to take comfort and pride from the fact that you took ownership of the process and achieved a great outcome... You effectively beat the system ( thing I failed to do a few weeks ago when I was told I would not get Alpelisib) , you should run workshops on how it's done! 😉

[Julie2233 in reply to Marieleb]

Thank you that’s really interesting, I don’t know what the dose will be yet but I’ll bear what you’ve said in mind. I didn’t ask about alpelisib, but i’ll have a look, thanks

Hope you get the results you want from your pet scan! Jx

[Hidden]

Hi Julie,

Good for you for fighting your corner. I'm glad your oncologist is willing to put you on this trial for three months. Let's hope it works for you and you will not need to start chemotherapy. I am not against chemotherapy. In fact, when I first met my oncologist I was all for chemotherapy until I realised I had other options. But if there are other options, then it is worth exploring those first before you move to that. Please keep us posted on your progress. I really hope this works for you!

Take care,

Sophie

[Julie2233 in reply to Hidden]

Like you, I’m not against intravenous chemo but I want to try gentler options before I go on it again. I have to be honest, I didn’t expect the oncologist to listen to me and was surprised when he did. I think having a list of questions which were quite detailed I front of him helped. He also had a student sitting in and I don’t think that damaged my cause Jx

[Hidden in reply to Julie2233]

Hi Julie,

Yes, that's how I feel too. Some people are completely against chemotherapy and want to try everything else that's out there. I would try chemotherapy in future if it came to it. I know I have it in me to deal with whatever comes my way. You got a good response from your oncologist. He sounds like a compassionate person, willing to try something else before offering chemotherapy.

Take care,

Sophie x

[mariootsi in reply to Julie2233]

Your onc sounds great.

[Julie2233 in reply to mariootsi]

I don't like him at all. I've been seeing him since last December and he has no idea who I am. I feel like I'm just another case, he even gets my name wrong everytime I see him. He is rude, inaccessible and dismissive, but he has a good reputation as an oncologist. So I'll put up with his manner. I was amazed that he took my questions seriously and answered them. So that is worth staying with him for 😊

One of the nurses told me that her mother was treated by him and the only time he smiled at her was when she was discharged but they thought it might have been wind! 😊

[mariootsi in reply to Julie2233]

Ha!

[Hidden in reply to Julie2233]

Hi Julie,

I'm sorry to hear that you do not like your oncologist. He doesn't sound like he is very approachable, but at least he listened to you and took your concerns on board.

My husband does not like my oncologist. I look at her positive qualities and have been trying to convince him that she is actually a compassionate, caring person. He just sees her clinical manner. I have seen a bit deeper and I liked what I saw.

Sophie

[Julie2233]

I think that we are all intelligent women on this forum and none of us would enter a mortgage agreement without asking a lot of questions about its suitability for us. The bank may be the expert in finance by we all know that banks have other priorities besides our wellbeing.

So why have I found it so hard to have a similar sort of conversation about my treatment with my oncologist? I’m not saying that he isn’t making my well-being his priority but like the bank he has to take into account other things that probably aren’t my priorities. And like the bank he doesn’t know me as an individual.

I know that many of you have good access and good relationships with your medical teams but I think a lot of us don’t. This forum gives us the basic information we can take away and look into further and use as the basis for discussions with our oncologists to ensure we are involved in the discussions and decisions about our treatment. After all at the end of the day these treatments are more important than a mortgage. And yes it is empowering to feel that my voice was heard! 🙂 Jx

[Jerseygirl45]

Hi Julie,

I always go in with questions or ideas.

I saw my oncologist last week had pet scan Monday. The result is probably on my electronic chart but I am afraid to look at it today because I am going to a yearly barbecue with friends I hung out with as a teen. So if it is bad I will be depressed and not want to go. I guess I will read it tomorrow. I see her on Monday to go over a plan. If my first biopsy has the right mutations she is going to try a new cancer drug. Don't know the name yet. If not the right mutations she will try a different chemotherapy treatment. The big thing is what kind of side effects will I have. I am now between treatments and feel good. It's the meds that make us feel bad.

But being on this site and hearing the different treatments everyone is on gives us the question to ask. We need to know what is happening to our Body and how we can be involved in our treatment.

My daughter is the caretaker she ( she just sits with her all day so she is not alone)of a 60 yr old women with pancreatic cancer. Her husband said she has less than 6 mo to live. She thinks she is going to get better and no one is telling her the truth. I think that is terrible, she should know. But her family won't tell her. She is having chemotherapy every other week.

My point is stand up for our selves so we can have a full life as long as we can. Not wasting time thinking it will go away.

I am glad you asked questions and are involved in your care. Keep up the good work and I hope it works for you with no side effects.🙏

Barbara

[Julie2233 in reply to Jerseygirl45]

Thanks Barbara.

I agree, I think it's appalling that the woman's family are shielding her, probably with the best of intentions, but still they are lying to her. I don't ask about life expectancy or prognosis because I don't think anyone can reliably predict it. I know that I'm now 51 and I probably don't need to worry about what I'm going to do with myself when I retire at 67 But at 60 that woman is still young enough to be fully involved in her care and making her own decisions and preparations. It must be very hard for your daughter to be the woman's companion in such circumstances.

Hope your meeting on Monday goes as you want. Jxx

[Jerseygirl45 in reply to Julie2233]

Thank you

[mariootsi in reply to Jerseygirl45]

Barbara,

I'm hoping for good scan results! Like you I always wait to get results from my onc! Never look at patient portal. It would freak me out too.

[kearnan in reply to Jerseygirl45]

Well they know their mother better than we do. Maybe, knowing how she is, they have decided if they told her she has less than six months to live, her last months she is going to be scared and depressed. If she hasn't asked how long she may have, she may not want to know. So for her it's best to let her think the treatment may be working. If they tell her she is expected not to live more than 6 months (and who has not heard that before only to surprise doctors) she may be become depressed, scared, stop eating and not enjoy her last days with family. If she really wanted to know, she would ask. She may actually know herself but doesn't want to hear it aloud.

[Jerseygirl45 in reply to kearnan]

You are right. Maybe she does not want to know. We are all different. It is so hard dealing with cancer. I guess her family knows her better than we do.

Thanks Barbara

[Hidden in reply to Jerseygirl45]

Hi Barbara,

It is wrong to lie to the lady and not let her know that she does not have long to live. When death is imminent like that, the truth needs to be told, not withheld. I know how hurtful it can be to be on the receiving end of such lies. When my mum had just six months left to live I was told by the doctors that she was recovering, but my dad was being told the truth that she was actually in decline, and that she would not make it. I thought my dad was just being pessimistic, so I tried to cheer him up and tell him she would recover.

I was only told the truth the day that she died. The hospital called us all in and sat us down. They said that my mum was unlikely to make it through the night, and they were right. She died that night. I felt robbed of the truth. I did all I could to take care of my mum, but if I had known just how serious her condition was I would have done things differently. Looking back, I now know that she knew she was dying, but she didn't mention her fears to me. I remember one occasion when the occupational therapist and I were sat around her bedside talking about all the different adjustments that were needed to be made to the house before she was discharged from hospital. My mum's expression was one of disbelief, as if she knew she would not be coming home, and she was right.

Sophie

[Jerseygirl45 in reply to Hidden]

Hi Sophie,

I am so sorry you had to go through that with your mom. I guess parents try to make it easier for there children and don't tell them everything. But I don't think it is fair not to tell the patient. I don't tell my kids details of my condition or treatment. They are all grown and have problems of there own. I usually say I'm good.

But my daughter feels bad because this woman will not even go to a movie or her brand new shore house they just had built because she is waiting until she feels better. My daughter said go to the shore this week spend time with your grand baby.

I guess we really don't know what is best, there is no way to make things easy.

Her husband just wants to take care of her.

It is hard on the family. I don't know what I will do when it is my time. Tell them or not? But I want to know everything about my condition.

Barbara

[Hidden in reply to Jerseygirl45]

Hi Barbara,

You are probably right. My mum may have just been trying to shield me, as I am certain she knew the truth. I know my dad did. I was not immediately told about my mum's cancer diagnosis until I heard about it from an uncle. I was living in America at the time and he called to tell me my mum was having chemotherapy (he was living in America at the time too). It was the first I learned about it. I got back home and when I did I was there until she died.

When you don't tell relatives what's happening, they will not necessarily thank you for it later on. They will be left with regrets and unanswered questions. I look back and wish I had known sooner that my mum was dying, rather than getting better. I couldn't get my head around why she seemed to be getting worse and worse, and then she ended up neutropenic and spent the last five weeks of her life in hospital.

It is a hard decision to make. But I know that if and when it happens to me, I would want to be told the truth. I don't want people pretending. I have a feeling that when someone is dying they know what's happening to their bodies. I know that I am more in tune with my body since my diagnosis.

Sophie

[Julie2233 in reply to Jerseygirl45]

Hi Sophie and Barbara, I agree with you about protecting our loved ones and I try to do that but I know it can backfire.

Barbara - you must have felt totally betrayed at an awful time.

My husband's mother was found to have stage 4 breast cancer back in the 80's when there was no treatment. It was already widespread when it was diagnosed. My husband was in his early 20s at the time and working abroad and no one told him. He came back to the uk for a short break to find her in a hospice and she died a shortly after. I don't think he ever got over it and it impacted on his relationship with both his father and sister, and I have had 35 years of dealing with the fallout of the death of a woman I never met. I really believe they were trying to protect him.

My son, who is 21, has worked in the States for the last 3 summers. This year he has been asked to stay on and has the opportunity to study as part of his job. He has made me promise not to keep anything from him and I think that promise will enable him to stay away.

I don't give them the ins and outs of my treatment but they get an overview.

I already know that when I'm told there is no more treatment that my time will be limited and knowing that makes me enjoy my life and live it to the best I can. If I thought things were going to get better I don't think I would do this.

[Hidden in reply to Julie2233]

Hi Julie,

Your mother-in-law's death must have been devastating for your husband. I can really relate to how he must have felt. I am sure his family were just trying to protect him, as mine were of me, but when you finally find out the truth it appears to come out of nowhere. Others have time to get used to it, but when you find out at the very end of someone's life that they are dying that can be awful.

My dad knows I have breast cancer, but like you I don't go into all the ins and outs of my treatments and so on. I don't want my dad to die, but I am hoping that when the time comes he will die before me so that he does not face the prospect of having to bury his daughter. My hope is that treatments will continue to improve and we can all live for many more years to come.

Sophie

[barbarac76]

HI Julie,

I agree with all the other ladies. Great that you approached your oncologist about other options and that your oncologist responded. It's not always easy to advocate for yourself. So happy you did.

I went from letrozole (w/o Ibrance because it wasn't available in 2013) to the Afinitor/Exemestane combination. Marie (another post) was right about dosing. I started on 2.5mg for a few days, then went to 5mg. When I was on 5mg, I had no problems (other than some annoying mouth sores for which there are remedies), but when my oncologist increased my dose to 7.5mg after one month, I had extremely elevated liver enzymes. She took me completely off for a month, then went back to 5mg, which I stayed on for a year reducing some nodules and keeping me stable. After one year when there was a little progression, she increased my dose to 7.5mg every third day, 5mg the other two days. She gradually increased the dose during the 2nd year until I was back to 7.5mg daily. No liver enzyme issues, but my lung lining became inflamed towards the end, so I had to stop Afinitor. I had gone for a second opinion from Weill Cornell in NYC ( I am treated at Memorial Sloan Kettering). Their protocol is to start patients at 2.5mg. Both oncologists said that it is extremely unusual to tolerate the highest dose, which is 10mg. Hope this information helps. Everyone responds differently. I hope you do well with it.

[Julie2233 in reply to barbarac76]

Thank you, that is really interesting and useful information. Jx

[MMMP]

That’s what I just started about 3 weeks ago-the Afinitor and examethane - I need it to work- the ibrance did nothing for me -... I’m not going the taxol route- it didn’t work for me in the very beginning when I only had 8 doses- so why would it work now- my 15-3 is off the chart at 1031.....up from 800. Nothing in my lungs or liver just in bones!!

[mariootsi]

Julie,

Glad you had the info to make a case with your onc!

Wishing you healing with your new treatment.

So scary changing drugs but it will happen to all of us. We are here for you.

Keep us updated.

Love and hugs,

Marianne

[Selmac]

Julie, you're right, we're all different. I was on highest dose of Afinitor and Aromasin for over 7 months before I started having side effects. I felt wonderful. The side effects were pressure behind my eyes and they would bleed like I had broken blood vessels. That is a very, very rare side effect. My Oncologist had never had a patient with that side effect before. I also had a tiny basal cell on my nose that the Afnitor made bleed and it became deep. After 16 months I was taken off for a break and had surgery on my nose. I've been back on for 4 moths at a lower dose. I drink 60 oz of water per day with a full lemon in it and eat a ton of fruits and vegatables. Since I've been on it had slight improvement but no progression. They had to close a school last winter because the flu was so bad.I didn't even catch a cold and I work with children at Church. Like you said we're all different. I was so scared when I started it but it hasn't been bad for me. My hair is extremely dry and the back has become curly but I have a full head of hair.

[Julie2233 in reply to Selmac]

Thank you, that's so comforting to know that you've had such a good and ongoing run with it. I start this week and I am scared. I've been so well on faslodex and ibrance and I worry about going back to not being well. It's good to hear that you've done well on it 😊