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Sacituzumab govitecan

Cherry38 profile image
43 Replies

I recently had more scans and unfortunately my cancer has spread to my lungs and more in my liver.My bone mets are not to bad but two active ones in my T2 and Right hip even though I had recently had radiotherapy on them again for palliative pain relief.

I have been on four lines of treatment in 17 months, including 2 clinical trials and each one I have had progression.

My cancer has changed from er+pr+her2- to TNBC.

I have been told to make memories with my children and my life expectancy is under a year.

I am going to try this treatment and I was wondering if anyone has been on it, any information would be greatly received on side effects.

Having terminal cancer is such a lonely place and to know I won't see major milestones for my teenagers is heartbreaking, I am angry at everything right now, my faith has left me.

I was given a suggestion of a combination treatment but still I can't get it on our pbs in Australia. So I would have to self fund.

How they decide one person can get it free, but I can't is just mind boggling.

I felt and still feel at the start of my journey being diagnosed at 49 de-nova. I have been just given this and that and no real sense of fighting the cancer. Basically you are stage 4 that's it.

My positivity on life has plummeted so much. Does anyone else feel like that.

Thank you, beautiful people for listening to my rant and look forward to any information or help.

💗💗💗

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Cherry38
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NPmary profile image
NPmary

Cherry, I am more sad and sorry for your news than I can express.It is a devastating and dark place. Please know that anything you feel, any feeling you have is OK- its likely to change, come back, change again - cause dang it while we are still here we can count on one thing . . . everything changes. There is nothing fair or right about you not seeing your children grow to adulthood.

I wish the inexplicable for you: More Time! I also wish peace and love and comfort for you. I wish much more often than I pray because I simply can't believe in a God who is "in control":

granting good things to one and not to another. There is no escape or cure for the pain that comes with the human condition, with simply being human.

I don't agree with calling your sharing (or mine or anyone's a rant) it just is. My prayer is often: please, God be. For sure this God is big enough for our feelings and doesn't need us to say the "right thing or a formula". I imagine this God is a huge Allower of many things and somehow is also Love.

I am sorry, sorry, sorry for sounding preachy - and I am sorry for any offense taken.

Please accept the brokenness and just be here for Cherry and one another.

Mary 🫂❤️🫂

Cherry38 profile image
Cherry38 in reply to NPmary

Thank you Mary 💗 💗💗

NPmary profile image
NPmary in reply to Cherry38

💜💜💜

Cherry38 profile image
Cherry38 in reply to NPmary

Thank you again Mary, your kind message means a lot to me. I hope you are going ok. I am so blessed to have met beautiful ladies on here and the ongoing support is just beautiful.Keep strong lovely 💗💗💗

Best521 profile image
Best521

You are in my prayers at this very moment. This is a scary moment, but there is always hope. I also have an aggressive fast moving cancer, three lines in 18 months, two trials. Sacituzamab Govetican has given me more time. I skipped over oral treatments to go on it given it’s effectiveness. There is a wonderful article in the New York Times about Trodelvy/Sacituzamab Govitican which may bring you comfort. Hopefully you are able to access the article.

Is a Revolution in Cancer Treatment Within Reach?nytimes.com/2023/06/16/opin...

From an old sales person who doesn’t take no for answer.

Cherry38 profile image
Cherry38 in reply to Best521

Thank you lovely.I found that report a very interesting read. I hope you are going well. I will be starting my 5th line of this drug next Friday. Every treatment I get progression. I was on the piqray and fulvestrant as I have the mutation pik3ca it worked a little but got progression in rib 3,4 and 5 on the right side. I had palliative radiotherapy which helped the pain.

I was given results back from my bone biopsy from Sydney I have another mutation called TP53 my oncologist said this was quite common.But the combination treatment they suggested my oncologist said I still can't get keytruda on our pbs, I don't match the criteria. I have written to our health minister but not heard back. It's something to do with being diagnosed TNBC after er+,pr+her 2- they don't recognise it as first line. If I was TN first time I could get it on pbs. Absolutely ridiculous rules. There is a trial in Sydney phase one but I would have to be away from my kids to trial it, it's an option but as I have been told to get things in order I don't want to miss being with the kids. It's a catch 22 really.

I hope this treatment works really well for you, keep me updated sweetie. We have to keep on keeping on. Thank you for your beautiful reply 💗💗💗

mackster profile image
mackster

Your anger is totally understandable. You are fighting for your precious life & sometimes it feels like banging your head off a brick wall. I hope your anger motivates you to do whatever you can. Can you get a second opinion regarding treatment & payments? You should be able to. You may feel exhausted at the moment, so gather your strength. The valuable information that you have shared about changing hormone status, that could be relevant to outcomes and is worth being aware of. I believe there are more treatments for triple negative breast cancer now. Alpelisip with Fulvestrant here in the UK, it targets PIK3 gene mutations. I don't know if I have gene mutations, they won't test. Also I couldn't have that combination as I'm already on Fulvestrant. I went from ADH to DCIS to stage IV all while having yearly mammograms. After a very rocky time I am currently stable. There's so much to say about screening & treatment. Thinking of you & sending positive wishes in your direction. x

Cherry38 profile image
Cherry38 in reply to mackster

Thank you lovely.I am very frustrated that I can't get Keytruda unless I pay for it. I don't meet the criteria, if I was first diagnosed TN I could but as my status has changed they don't treat it as first line.

I tried the piqray with fulvestrant as I have the gene pik3ca but again unfortunately I got progression so I was taken off that trial. I was another trial too but got progression.

I am just hoping this treatment might give me more time, it's so exhausting. I get used to side effects then after 3 months I am off treatment again. Then I start again.

I always have hope and I will keep fighting till I know I have exhausted every avenue but also my kids time with me is the most important, trying to live as normal as possible but making memories together.

Keep strong lovely and thank you for beautiful message 💗💗💗

Hopeful4Cure profile image
Hopeful4Cure

I agree and we are all here to help with support. Besides getting a second opinion you could do testing if need be at a private lab, but it seems you have been tested. It is essential to be proactive and get options for help from the care center at the hospital. Be strong. Blessings

Cherry38 profile image
Cherry38 in reply to Hopeful4Cure

Thank you lovely, I think I have been tested for everything now. I am hoping to see an oncologist in Sydney about a first phase trial, but this will be my opportunity for another opinion if it goes to plan, its just i will be away from my kids and every moment with them is precious . I had another oncologist when I was on another trial, he was very positive until it didn't work. But I am glad I met him and he has been working with my oncologist where I live. My emotions are all up and down. As we all feel, I have met beautiful ladies on here and I appreciate all your help.

I hope you are feeling ok. Keep strong and thank you for your kind reply 💗💗💗

Timtam56 profile image
Timtam56

Dearest Cherry.

Words….what to write to you to let yo know …. I am angry for you too? I read on here a lot about a god that I don’t know about at all. I am probably agnostic, but maybe even more than that, I don’t know about anything anymore.

Just that if we are born, we are sure to die. And I know when I came here 5 years ago just before my partner died of Hodgkin’s lymphoma, and I had just been diagnosed, I read a lot of people thoughts on god. No god could have helped him. I don’t think any god is going to help any of us. That’s my take. And I thought I would be gone by now. That’s for sure.

And also my take is that it’s not fair that you've got this, and you’re too young. And your children are too young. And I wish there was something that I could say to make it better. But I know I probably can’t.

I just hope that you find some peace along this road that you’re about to travel. I hope that some of us here can give you some words to carry you along the way.

Chris…..

(Struggling along on Piqray for now)….. I also hope I have not said anything to offend you Cherry, anyone here. And that we can all just be here for each other on this very real journey that has no rhyme or reason.

Cherry38 profile image
Cherry38 in reply to Timtam56

Thank you Chris. I do hope things settle with the piqray. I was only on it for 2 months it worked quite well for some mets but unfortunately I got progression again in my ribs. I think it's a marvellous drug though and out of all i hsve tried so far that was the best in shrinking the tumours. It's just so sad we are all going through this. My oncologist was in tears with me yesterday she has tried hard but it's frustrating. I can't believe 3 months of the doxorubicin it's spread that quickly in both lungs multiples of tumours. My liver too was behaving with only two mets but now has more. She actually didn't show me scans this time. I have been having headaches but my brain is clear, I have pain in my right shoulder so badly which is from the liver. Pain relief isn't helping much and I am on high dose of Targin. But my trusty fluffy pink hot water bottle is just the ticket 😂.

My faith has really dimished, I am just angry.

I think how can people suffer so much. I do then think to myself I am blessed in so many ways. I was so lucky to be a mom and that is the best for me.

I am so sorry you lost your partner and then dealing with your diagnosis. My heart goes out to you. You are so strong, we always got to have hope. Thank you again Chris for your kind message lots of hugs Cheryln 💗💗💗

Timtam56 profile image
Timtam56 in reply to Cherry38

I’ve just sent you a private message. Sending you hugs and hope for a very lovely weekend.

awesome4ever profile image
awesome4ever

Hi Cherry. This is a hard post to read and trust me your frustration and release of true feelings(I would never under these circumstances consider it a rant) are very warranted. Like most of the other responders the sadness I feel for you is hard to express. I was raised with religion but after my diagnosis (also De Novo like you) it was impossible for me to believe that a true God could exist that would allow so many good people to be hurt and die yet the world is full of very bad people who continue to thrive. Anyway I understand your loss of faith right now.

Having terminal cancer is such a lonely place I agree but even though you have been given a timeline per sec remember you are not a statistic. Now that they know your receptors have changed to TNBC at least they know what they are dealing with and why your previous treatments haven't worked. Cherry what I will say is that Sacituzumab govitecan is probably the biggest breakthrough drug to become available in many years to treat TNBC. All the various clinical trials show it is much more effective than traditional chemotherapy drugs so as you begin your next treatment try and stay strong and be stubborn towards that blasted cancer....mentally tell it that you are planning to kick it to the curb where it belongs. I know it can be frustrating that you can't access certain other drugs....I truly understand because in Canada I also have a public funded healthcare system which limits drug choices(it opens up more once you are age 65+ but if you are below(I just turned 60) you are out of luck).

Any of us truly when we have this disease should have our affairs in order and making memories with your kids will have a positive effect on you and in todays media world it can be documented for your children to reflect back on in the years to come.

I hope you can pull back on your positivity and fight to not just let cancer have it's way. Your life is worth fighting for. I am really hopeful that Sacituzumab govitecan which is a new generation drug-antibody conjugate will be really successful at stopping your progression and with it's good safety profile with regards to side effects then you can move forward and have fun with your kids.

All I can say is the ladies on this board will all be here for you as you start this new journey. Write whenever you want to share your thoughts, frustrations etc and please know we will have your back and I can definitely be your cheerleader if you need it. Take care.

Cherry38 profile image
Cherry38 in reply to awesome4ever

Thank you lovely, it is frustrating and sad, I have always been quite positive and always had hope. But after my meeting with my oncologist I felt all my hope had gone. Seeing all the beautiful messages it has given me the strength and I have to keep on. I just hope this new treatment gives me more time, stable just once would be wonderful. When I was given the timeline, I felt physically sick and the worse anxiety I have ever felt.

I emailed my brother straight away as he lives in the UK and he said I can't wait, in five years you will walk in with a bottle of champagne and prove the oncologist wrong. Bless him.

The kids and I had a good chat too and I have told them, I will exhaust every avenue possible as long as it doesn't take to much quality of life left.

There is a trial in Sydney but phase one and it would mean being away from the kids, it's an option but one I need to really think about it.

The combination one suggested, I can't get my head round why I can't have it. It also would cover my pik3ca mutation as well as TN. I can't give up hope, but my faith I am struggling with still.

I hope you are going well my friend. My brother stayed in Canada for 3 months flying and he loved it. It's one place I have always wanted to visit.

Take care and thank you again for your beautiful message. 💗💗💗

kellylinkane profile image
kellylinkane

have you use the keydruda yet i thought is newly approve immue medication dor triple negative breast cancer though sounds promising.

Cherry38 profile image
Cherry38 in reply to kellylinkane

Yes it's available here in Australia but only for first line TNBC. I have written to my health minister. It costs around 3000 dollars per treatment if I have to self fund. Because my cancer changed from er+pr+her2- to TN they don't class it as first line. I am starting my 5th next Friday. It's just so frustrating when the combination suggested for me with the pik3ca and TP53 mutation I can't get on our PBS.

I will start this new treatment, I just would love to be stable. My oncologist has given me less than a year for survival. It's very scary but I will keep fighting as ling as possible.

I hope you are going well lovely. Take care 💗💗💗

kellylinkane profile image
kellylinkane in reply to Cherry38

I am follow this Chinese women has triple negative cancer has beerecent n spray to her brain for about 2 years she is now 41 years old she was on some kind of immue treatment in China Wu Han for year brain mass are stable for 2023 until jan 2024 then they start the trodelvy after 2 treatment now she is ok her face one side was drop walking unsteady now she is ok i follow her since 2022 when she Dx, seems not much side effect though.

Kerryd22 profile image
Kerryd22

Hi Cherry

I can’t add much but I do know of a lady on another site who originally rejected Trodelvy because she anticipated that she wouldn’t cope with the side effects. Long story short she did decide to try it because there’s no guarantee which side effect you’d get anyway and if you don’t try the drug you’ll never know if it works. She’s had an awesome response on Trodelvy. No side effects and it started working immediately.

The big selling point of the new combo drugs is that firstly they work well but secondly the side effects are less than the combined side effects of each drug put together.

I’m assuming from your comment regarding the oncologist’s tears that she hasn’t been able to get compassionate use from the drug company for Keytruda. Instead of the health minister you need to write or call your local member. It’s their job to intercede with the relevant departments.

Share your story online but be careful about identifying features (just in case it attracts the wrong person) because you might find publicity will have the effect of bringing the loophole that’s stopping access to the most effective drugs for the change in your tumour into the public arena.

It’s no secret that cancer mutates and there should be a way that government agencies deal with that outcome. Government members hate to be shamed in social media posts.

All the best

Kerry

Cherry38 profile image
Cherry38 in reply to Kerryd22

Thank you Kerry for your kind reply, I am glad your friend tried it and no side effects sounds wonderful. I know we are all different but that sounds very positive.I feel for my oncologist she has tried every avenue, which I am truly grateful. I just very frustrated that keytruda is available for first line TNBC on pbs, but mine isnt classed 1st line as the cancer changed throughout.

I was so excited last week when I got my results from my biopsy from Sydney with there suggestions but then told I can't get it free. I can't get over 3 rounds of doxorubicin and it's spread so badly. To be told a time line is so frightning. My hope just disappeared in one swoop. Reading these messages has given me encouragement. This might be the one. Just to be told no progression for the first time would be marvellous. I am so lucky to have my kids, they are scared but keeping me to keep on. I just wish there was a cure for us all.

I will continue though to keep looking at ways to see if I can try the keytruda. I found a number for the makers of the drug and I thought should i ring them. It's silly really but I do feel I don't want to upset my oncologist looking into it myself, but then I think I have to advocate for myself it's my life.

My local MP is another one I thought I would write to. I haven't heard back from the health minister but I can write again.

I hope you are going well. Keep strong and thank you again Kerry 💗💗💗

Kerryd22 profile image
Kerryd22 in reply to Cherry38

Cherry I’m sure I’ve shared this story before but I’m going to repeat it because I like it. A woman on another site is into her 23rd year at stage four. Her liver was filled with mets and she was out of options. She’s HER+ and there were less options for her at the time just as there was for TN but a trial for Herceptin opened up and she went onto it. Her liver mets cleared completely within nine months and she remained in remission for nine years. She’s 73 now so she was your age when she was diagnosed as stage four. As you quite rightly said, Trodelvy could be the ideal drug for you just as Herceptin was for her.

The issue with drug approval is a vexed one because all drugs are approved by the FDA in the US before they go into use in a very large market so once an FDA approval is granted, we should be able to get the drug here too. The PBS have already negotiated the price for Keytruda because it’s on the PBS so the agency responsible could either negotiate a better rate and supply it to a wider audience or just provide it to all those it can help.

There’s extensive grants and options to get drugs cheaper in America and there probably is something similar here too. I understand your reluctance to tread on your oncologist’s toes but I doubt she’d be offended. She would more likely be relieved if you could get access to another option.

We don’t get offered a prognosis here in Queensland because doctors know that it would only be a guess based on outdated statistics. The federal government is supposedly going to update cancer statistics so that rather than the current system which doesn’t record progression through the stages they’ll collect and collate the data more completely. If you’re diagnosed at stage 1 that’s where you’ll stay on the cancer registry.

Even if your oncologist pulled out a crystal ball 🔮 there’s no way that they can say how long you have left. You’re highly motivated to stay alive but the more important aspect is positivity. I’m not suggesting that you should not be angry, unhappy, devastated - you have every reason to be all of those things. Getting a stage four diagnosis is the time when your grieving process commences. Changing medication is nerve wracking because we feel so much rests upon it but I prefer the Schrödinger’s cat method. Until I open the box, kitty can be dead or alive, depending upon how I feel about it. I always think that kitty will be safe and sound and meowing for food probably after being shut in a box for any length of time. It’s a pop culture reference but until I know definitely that the scan shows something negative, I always assume it will be positive. The only way I’ll know if the treatment works is by a scan so until then, as far as I’m concerned, everything is fine.

I don’t have children but I do have people who care about me. I find that staying positive helps with those relationships. Really they don’t understand what we’re going through but they are supportive. It’s hard to share all the things we’re experiencing because there’s a limit to what we can express without worrying them. They can’t fix the problem, but they’d like to. That’s not how I want to be remembered. I want people to think I was a superhero even though I’m not. I told my brother a few years back that I hope they’ll think of some nice things to say at my funeral. He said they already know what they’ll say. My nephew told friends that I’m the bravest person he knows and I bring honour to the family name. I’m not as brave or fearless as that implies but I’m okay with my friends and family believing that it’s true!

Fear Of Missing Out is real. You fear missing out on your children’s futures but they fear missing out on having you in their futures. Someone else suggested it - make happy memories while you can for as long as you can and that could be many years from now. Don’t focus on a guesstimate that a doctor has pulled out of the air. Focus on what you can do, not what you can’t alter. And take lots of photos!

Thanks for your good wishes and I hope that you do find The One this time!

Kerry

Liessie2014 profile image
Liessie2014 in reply to Cherry38

Hi Cherry, I am reading this and I think you should !! contact the Drug Company and your MP , it is so sad that you have to fight for a drug that will help you , I am so angry !! I wish I had the money to pay for you, keep strong , I know it’s easy for me to say that with what you are going through , we are all here for you anytime you need to express your feelings or need support , lots of love and hugs xx❤️xx

daniellebrooks13 profile image
daniellebrooks13 in reply to Cherry38

Cherry, have you gotten a second and third oncologist’s opinion? If not, please do so. Another oncologist may have different solutions. Also, 19 years ago, 2 oncologists told my husband that I only had 1-3 years to live. He did not share that with me but they were both way off. So please do talk to some other oncologists. Good luck! Danielle

Evmaw profile image
Evmaw

I am on Trodelvy myself now. I have a particularly aggressive hormone positive cancer, such that I have just had another biopsy to confirm it had not changed to TNBC. Trodelvy wiped out my cancer and really helped get me to just about NED on Signatera, from 500 something to 3.58 before my numbers have started to creep back up again. I had about 4 months where cancer was not on my mind every second and I have learned over the past 23 months since my metastatic recurrence that means treatment is really working well. It would seem I can sense when it isn't well before I can get the doctors to agreed with me. All that to say that Trodelvy has been excellent for me between the months of September and December 2023 and is waning in efficacy now. Hopefully it will clear you up and give you some much wanted extension of life. Please remember that you do not have an expiration date and prognosis estimates are just that. I have to remind myself often. A good read is Radical Remission by Dr. Kelly Turner.

Cherry38 profile image
Cherry38 in reply to Evmaw

Thank you lovely. I am so glad it has worked so well for you and to beable to have some relief of not thinking of the cancer. With all treatments we have to expect the efficiency falters, but to have a response is wonderful.

It's so hard when it's so aggressive, my oncologist couldn't give me reason why mine changed why it's so aggressive we are all different. They have been baffled by mine, in the meetings they have my nurse said after the piqray trial as having the pik3ca mutation they were surprised I got progression. It shrunk a few but started up in my ribs. That's when I had a bone biopsy done as nothing was working and it has changed to TN. But then 3 cycles of doxorubicin it's spread the worse in both lungs and more in my liver. I have the TP53 mutation too and apparently chemo wouldn't help. I am just sad and frustrated.

I really hope this treatment keeps working for you. Keep in touch and thank you so much for your reply. 💗💗💗

Evmaw profile image
Evmaw in reply to Cherry38

Absolutely. I will keep you in my thoughts and prayers that Trodelvy will work for you where others have not. It's so hard to feel so out of control. I am around the same age as you and have a teenage daughter. It is my hope that there will be effective treatments that are soon approved for people with our more aggressive disease. I was somewhat surprised my subtype hasn't changed to TNBC honestly as my cancer gave the meds like Kiqali and faslodex the middle finger where they have given others so many years of NED.

love2golfwell profile image
love2golfwell

I am so very sad for your news Cherry. It sounds like you have been through a lot since you were first diagnosed. It is difficult to continue to have faith and be positive when so many treatments have not worked. I hope and pray that this new treatment will be successful for you and allow you to have much more time with your family. Please know that we are here for you to offer comfort and support. Sending you hugs and prayers.

Cherry38 profile image
Cherry38 in reply to love2golfwell

Thank you lovely. It's just been so frustrating. Every treatment and nothing working. It's frightning as I don't want to leave my babies. They are teenagers but they need their mum as I need them. We are so close and it breaks my heart that I won't be there for them. I always dreamed of them getting married and having a family one day. I always wanted to be a grandma. I am trying to write things down in a journal for them both. My son wasn't well the other day and of course he needed his mum,I have to be careful because of a low immune system but just being there to make him comfortable and feel better, I worry when I won't beable to do that. How will they cope in life. I know they will but it's heartbreaking.

Being a mum was my biggest blessing, but I am struggling with my faith. I know God has a plan for me, but the pain I am feeling has turned to anger. I know I should be grateful as I have been blessed and so much heartbreak in the world right now. I am lucky to beable to access treatment and see a doctor. I hope in time it will come back. My son is trying to help me spiritually. My daughter is struggling like me.

I just hope this new treatment gives me more time to make more memories.

I hope you are going well. Keep strong and thank you again 💗💗💗

love2golfwell profile image
love2golfwell in reply to Cherry38

Dear Cherry, please try not to give up hope. I know it is difficult to think that we might not be here for our children's futures, especially when they are still so young. When I was first diagnosed with MBC I was also so angry and yelled at God. I felt it was so unfair. Then I realized that in order to survive, I had to channel my anger into doing everything I could to handle this challenge. Also, I was much older than you, so my children were grown and one was married. We are lucky to be able to receive good healthcare. Every day I read about the struggles of women and men who live in other countries or even in poor areas of the US who do not have access to the care we have. I believe that researchers are working hard to come up with new treatments that can give us extra time and don't cause as many side effects, and we need to pray their work continues. I think it is wonderful that you are writing things in a journal of each of your children. I have heard of people doing that, especially writing advice for different situations they might find themselves in. I have written letters to my husband and children to be opened one day when I am gone. I had two goals when I was first diagnosed. One was to see my son get married (he actually got married a few weeks ago) and the other was to be a grandmother (still waiting on my daughter for that). Right now I am just trying to live one day at a time, enjoying the love and support of my husband, family and friends. This new treatment might be just the one you need to keep going and be able to have the time with your family that you want. I do believe God is in control and He wants us to reach out to Him for faith and strength. Hugs and prayers.

Totheriver profile image
Totheriver

So sorry for the news you received Cherry. I hope and pray that they will find the right drug for you and that you will have peace💕. It is a tough road. Theresa

Conams profile image
Conams

Hi, I have recently been told my cancer has progressed in my liver and I am starting a new targeted therapy which is my 2nd line treatment and I feel very jittery, I too have two teenagers and when you get a kick back it's like you go through a grieving process all over again. I hope your new treatment will work, all the best. Xx💜

mariootsi profile image
mariootsi

Sending love , peace and serenity to you. You are strong and maybe you can get an advocate to get what you need in terms of meds or trials. There is always hope but we all know we will all be in your situation at some point. It is all so unfair. You are so young but keep exploring any available avenue you can! Bless you and your family. I am brokenhearted for you. I'm also very angry about health care systems that deny what we may need and when.

Breege_M profile image
Breege_M

Cherry, so sorry to hear your news.

My oncologist does not give prognosis as she has found patients tend to limit themselves to what really is an estimation.

Your situation about the drugs is very unfair and discriminatory. Does your local newspaper have a health correspondent? Media attention to the fact that your oncologist is forced by policy to prescribe you an inferior treatment (for you) might bring about changes.

MettavivorDS profile image
MettavivorDS

If there's a new tumor in a different organ that's triple negative, it might be possible to consider this a different cancer that can be treated with Trodelvy as a first line. Here in the U.S., I know someone else with two different types of breast cancer in her body and each type is being treated separately.

Cherry38 profile image
Cherry38 in reply to MettavivorDS

Hi lovely, thank you for your message. I asked about this combination treatment to my oncologist and she said the keytruda I was hoping to try wasn't available to me as my new diagnosis isn't classed as 1st line at TN. I said that's absolutely ridiculous. I have been researching a little my self. I had my results back from Sydney Research Centre and there in the comments were, the combination I have been asking about, they also recommended.

I am so glad I asked for the report. I showed her and still, it's a no.

The thing is, I have the pik3ca and TP53 mutations they need other drugs too as one treatment to cover everything isn't working for me.

I get so frustrated. I am glad I pushed for a second biopsy as 3 lines not working on er,pr positive her 2 negative and then pik3ca. But then 3 cycles of doxorubicin hasn't worked on my TN.

I just hope this 5th line of the Trodelvy might be the one to make me stable and give me more time with my children.

America is more advanced than we are. I have been on two clinical trials one through America which was the Inav0121. That was so promising and the piqray and fulvestrant worked wonders in some mets but then I got progression in my right ribs so it was stopped. I haven't been on anything longer than 3 cycles since I was diagnosed. Radiotherapy was promising in my breast tumour but that has grown to.

Another thing I wanted was to have my breast removed as the tumour was right at the edge of my skin and the pain was awful. I have an edema now and had cellulitis twice.

I had to wait as I was going on a trial and my oncologist kept delaying it. Finally I got 5 days of intense radiotherapy to shrink it. I still have problems.

I hope my 2nd opinion with another oncologist will be more positive. I am just trying to make as many memories now. All the messages on here has given me more positivity and I will exhaust every avenue.

I hope you are going well and thank you again for your message. Take care 💗💗💗

JMPhD profile image
JMPhD

Dear Cherry,

My heart goes out to you. Hearing news of progression and yet to have to try another treatment is so discouraging and nerve wracking. But, please don’t forget what awesome4 life said. This new treatment may be highly effective and last. Each type of treatment your body responds to differently. My dad had pancreatic cancer metastasized to 5 organs, was not responding to treatment, and told by dr he had 2 to 3 months left. He switched treatments and lived almost 3 years. The new treatment cleared 4 organs over a few cycles. I have metastatic breast stage 4 with very extensive bone metastasis. There was a scan not too long ago which suggested possible progression in the skull. So, I know how frightening this is. There are two people in my support group who have new metastasis in 2 areas…didn’t respond to 2 and 3 forms of treatment. But now they are responding . Hoping this nee treatment works for you❣️💟🙏

Cherry38 profile image
Cherry38 in reply to JMPhD

Thank you lovely for your reply. I am sorry you are going through this too. It's very frightning, but listening to everyone's kind messages I feel so supported. I just hope this new one might be the one. I can't give up hope. I always asked my oncologist to be honest from the start, but hearing get your affairs in order and make memories and the time limit I didn't expect. Just one scan to say stable, is all I would love to hear. I have a small mets in my skull which fortunately has stayed the same I just can't get my head round 3 cycles of doxorubicin and it's spread in both lungs and more in the liver. I am just angry that it can get to that point. I am so sorry to hear about your dad, I am glad he changed treatments to live 3 more years. It's so hard to see a parent go through it. My dad died of prostate cancer 11 years ago and I remember the day he said I am stopping treatment. I couldn't understand. But I do now and feel a bit guilty that I was upset with him. He did fight so hard.

My mum had BC but a stroke eventually got my mum. She went through an awful time. She didn't get to start treatment she was only 72. So healthy and fit, like my dad. It's such a cruel disease.

I am sending big hugs 🫂. I hope there is no more progression for you. Let me know how you are going. 💗💗💗

JMPhD profile image
JMPhD in reply to Cherry38

I'm so very glad you're feeling supported and you won't give up hope! I'm so sorry that you lost both parents to such difficult health problems. I should add that the oncologist who ultimately started my father on the protocol that reduced cancer to one organ...initially tried to tell my dad, chemo wasn't worth going through. It was so late and about to take over the liver. My dad said I've read all the research you've sent me, "I'm a mathematician and I've decided the odds don't apply to me, let's go". Then the miracle happened, so you never know and neither does your oncologist. As much as she cares, she doesn't know what may still be possible!

Thanks for the wishes. I'm sending more hugs, hope , love and prayers your way. 💞💓💓💞

Dragonfly2 profile image
Dragonfly2

oh my dear I’m so sorry! Such an evil disease….yes, when we’re not feeling well or have had bad news, it’s so easy to just give in to despair. Do get help from palliative care…it’s more than just pain management. My heart is with you and your family. ❤️‍🩹❤️‍🩹

Cherry38 profile image
Cherry38 in reply to Dragonfly2

Thankyou lovely, for your message, I have felt more positive since reading the beautiful messages. I have always been positive, but that despair crept in and I thought this is really happening. But I will fight on and if it's time to stop I know in my heart I have exhausted every avenue. It's funny about the palliative care, I have asked twice to talk with someone to organise everything.

I know in the UK palliative care is started at the beginning and studies show it benefits the patient so much better.

My friend works in the district over there and she said the same. But in Oz they seem to leave it near the end.I have been receiving palliative pain relief and radiotherapy on a couple of fractures in my T2 and hip. I call it spot maintenance. Finally my oncologist has agreed to put me forward to the social worker in the clinic.

I also going to do a medical directive form, I think that's what it's called so my daughter doesn't have to make any decisions on my behalf, I will have all my wishes written down. I had done one similar years back with my solicitor but it will be so much better for the kids to have it. Peace of mind.

I hope you are going well, it's awful we are going through this terrible disease. I just hope one day there is a cure. Take care and thank you 💗💗💗

RLN-overcomer profile image
RLN-overcomer

Greetings Sister, and yessss Warrior👍 I am so sorry you are feeling so discouraged😪 I pray you continue to to keep the faith, and access the Warrior in you. Even when things seem impossible our FATHER/GOD is in the business of working miracles 🙏😊. I am praying for your miracle Amen I do send you many virtual hugs XoXo

Cherry38 profile image
Cherry38 in reply to RLN-overcomer

Thank you lovely, my faith has been tested. My son sat with me the other night and we read some of the bible together. I so admire my son, we talked and I felt so much better. He's only 15 but his belief in God has helped me. I am so blessed to have two amazing children who bring me so much love and joy. The humour we have between us helps to. I really hit rock bottom with my last scans and my oncologist meeting, but the beautiful messages off all the ladies here have given me so much hope. I hope you are going well and thank you again for your kind message 💗💗💗

RLN-overcomer profile image
RLN-overcomer in reply to Cherry38

Sister/Warrior GOD did not put us here, or keep us here for ourselves. Iron sharpens iron. We are obligated to strengthen one another. I see you getting stronger💪🙃💪🙃💪🙃

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