Time for a new treatment
Some of you know I was expecting results yesterday. Unfortunately they were not good. I guess we knew it would eventually happen but you always have that little glimmer of maybe it's all gone. I feel no different. So I have progression in my lungs. More spots and existing spots bigger. They don't tell me how many there are because they are 'numerous' - now a few are over the 1cm mark. No cough, shortness of breath or pain - completely asymptomatic. Skin met fine, lymph node the same. Bummer!
Of course I have had a big cry. I am grateful for 7 months of the disease doing nothing - greedily I wanted more. remember that image of my son's wedding - somehow it seems a long, long way away and out of touch right now.
But I am dusting myself off and picking myself up of the floor and moving onto the next treatment - Tykerb and xeloda. I will also have a biopsy of my lungs next week to see if we can get some more information on these lung tumors.
I have too much to live for. I need to be here to guide my children through their childhood. They shouldn't have to see their mother go through cancer.
Perhaps I am going to be controversial but I have to say a few things.
- money needs to be spent on research into metastatic disease and finding a cure - now!
I have more to say on this but my son has woken up and come into bed with me for a cuddle and that's more important right now.
Much love and light - never give in - choose life!
Amanda xx
Comments
-
Only sending positives to you Amanda. I hope you know how much all of us pink sisters love you and want all good things for you and your family. Keep on living the very best you can. XLeonie
0 -
Only sending positives to you Amanda. I hope you know how much all of us pink sisters love you and want all good things for you and your family. Keep on living the very best you can. XLeonie
0 -
Hi Amanda
Enough has been said about the Pink October thing and awareness on this and other forums. For those living with Stage 4 disease we need research in this area. American women are signing off their posts with "enough of this disease, it's time for a CURE!" They are starting to lobby for what Amanda is talking about.
From a study being done by Robin L Anderson PhD at Peter MacCallum Cancer Centre, I think titled "Dormancy - the late onset of secondary tumours in breast cancer", it has been discovered that -
"While it has been thought that tumour spread is a relatively late step in breast cancer, there is evidence now that tumour cells are shed into the bloodstream at a very early stage of the disease." These cells remain dormant and can survive with minimal nutriment supply and they can evade the body's immune defences. At this stage they are not overtly harmful to the patient. This research is aimed at finding what causes them to stay dormant, what switches them on again to regrow and which gene controls this dormancy.
With findings like this it is obvious that this disease is a continuum and we should ALL be clamouring for more research regardless of where we are on the continuum - Stage 1 to Stage 4!
When I first recoverered from all the initial treatments following a breast cancer diagnosis I wanted to be a mentor and help other women through their journey but this was not possible through the recognised cancer organisations because I was Stage 4 from the beginning so I have gone the advocacy route. This has opened up a whole new world to me and I can sense a change coming, possibly driven by women like us!
Best of luck on your new treatment Amanda, I know Xeloda is a fantastic Chemo and very easy to tolerate.
With love
Joy K
0 -
We all need to keep vigilent with looking for answers. I am so proud of the courageous women like yourself striving to get results. I live in rural central queensland where there are not too many opportunities to find out this info. I am so thankful for the information that I receive from this site. It empowers me to ask questions of the specialists who are treating me. I have secondaries (minimal at this stage) but I am putting all the chemo drug names etc in my memory bank. There are so many amazing women travelling this journey. Thank goodness were are "linked". XLeonie
0 -
I am so sorry to hear your news and ofcourse you'd cry.You are not greedy to want more time with your family.As mothers we want to get our kids to adult stage. But I think getting a lung biopsy will be a very positive step to take. Hopefully that will tell your oncologist exactly what he's dealing with and target it with the right drugs.I think it's great that you feel well and have no symtoms. I was very interested in what you blogged Joy. I've just read a book by Bruce Lipton called "biology of belief".He is a scientist and says something similar in that something outside the surface of the cell influences the cell to change. I think there are alot of smart women on this site and if we keep reading and networking well who knows.So much pink money must get raised but I agree with Joy that not enough is going towards bc research and secondaries.
You are in my thoughts every day Amanda and I applaud you for staying strong.
Tonya xx
0 -
I just dont know what to say Amanda, I feel for you. I sense your strength and your sadness. I just want to send you a snuggle hug.
Love and light.
Maria333
0 -
I feel more women living with stage 4 Breast Cancer need to become involved in advocacy ,to be a voice and bring awareness to the needs of people with MBC. I Am looking into this.0
-
Oh Amanda, so sorry that your results were not good. .I have not been on this sight as much latley.You and the other ladies are always in my thoughts.
You have always given me the strenghth , to keep going when I have been so down and for that I thank you. I wish I could put my arms around you and make it go away.
I have had enough of cancer in my family. My sister was operated on last week for bowl cancer, 2 years ago lost my sister-inlaw to breast cancer , 3 years ago lost my brother to lung cancer and my dad to prostrate cancer.
There is far too much cancer happening to people now. The government needs to put more into research and stop waistng money.
Sending big hugs and positive thoughts. Debbiexxxxxxxxxxxxxxx
0 -
Thank you everyone. I'm moving on as I have to and currently I feel good. A few points on the above:
- you make great points Joy but I disagree with enough having been said on the issue - we live in a culture where death is swept under the carpet - stage 4 disease is much the same - exclusion from the broader breast cancer community is widespread (not everywhere). The 'survivors' of EBC are more generally focused on moving on, on breast reconstruction, life after breast cancer and it's hardships. We need to engage the BC community in active discussion about stage 4 disease. We need to stop hiding because we may upset and frighten people. There was a post on here recently about how someone would not come back because they had read about someone with stage4 disease! As much as I don't want to scare people, fear is a wonderful motivator.
The numbers in in the EBC community - we need them onside, advocating for a cure as much as we are. It's such a pity to talk about us and them. Since my diagnosis of Stage 4 I have been unable to find face to face support with other women - its all online ir hospital based. I've already grieved too many people but I also see so many stories of hope - thank god for the Internet or I would feel very alone.
AnneMaree - yes we do need to be advocates but to be brutal - we keep dying.
We are busy everyday just trying to stay alive, we know our time is limited so we choose to spend out time cuddling our kids and partners, having our chemo, seeing drs, managing side effects - I would love to be out there advocating more - I haven't been even able to take a holiday because I have until this week had weekly chemo - it's priorities and my family comes first, advocacy second.
I question the statistics - Joy help me out here. How much early detection finds cancers that could be stable inactive for years without treatment? How much does this skew statistics? What are the true recurrence rates? Why if they are so successful with EBC is stage 4 still incurable? Where does the money from fund raising go? I will be looking closer into this. I suspect a disproportionate amount is spent on education and awareness.
I perhaps hold quite a bit of anger about priorities in the BC community because of my status with this disease.
At the end of the day - as Joy said enough is enough, it is time for a cure! We can only advocate for this if the entire BC community unites in this cause and stops sweeping stage 4 disease under the carpet.
Amanda xx
Ps sorry for typos - have done this on my phone.0 -
Thank you everyone. I'm moving on as I have to and currently I feel good. A few points on the above:
- you make great points Joy but I disagree with enough having been said on the issue - we live in a culture where death is swept under the carpet - stage 4 disease is much the same - exclusion from the broader breast cancer community is widespread (not everywhere). The 'survivors' of EBC are more generally focused on moving on, on breast reconstruction, life after breast cancer and it's hardships. We need to engage the BC community in active discussion about stage 4 disease. We need to stop hiding because we may upset and frighten people. There was a post on here recently about how someone would not come back because they had read about someone with stage4 disease! As much as I don't want to scare people, fear is a wonderful motivator.
The numbers in in the EBC community - we need them onside, advocating for a cure as much as we are. It's such a pity to talk about us and them. Since my diagnosis of Stage 4 I have been unable to find face to face support with other women - its all online ir hospital based. I've already grieved too many people but I also see so many stories of hope - thank god for the Internet or I would feel very alone.
AnneMaree - yes we do need to be advocates but to be brutal - we keep dying.
We are busy everyday just trying to stay alive, we know our time is limited so we choose to spend out time cuddling our kids and partners, having our chemo, seeing drs, managing side effects - I would love to be out there advocating more - I haven't been even able to take a holiday because I have until this week had weekly chemo - it's priorities and my family comes first, advocacy second.
I question the statistics - Joy help me out here. How much early detection finds cancers that could be stable inactive for years without treatment? How much does this skew statistics? What are the true recurrence rates? Why if they are so successful with EBC is stage 4 still incurable? Where does the money from fund raising go? I will be looking closer into this. I suspect a disproportionate amount is spent on education and awareness.
I perhaps hold quite a bit of anger about priorities in the BC community because of my status with this disease.
At the end of the day - as Joy said enough is enough, it is time for a cure! We can only advocate for this if the entire BC community unites in this cause and stops sweeping stage 4 disease under the carpet.
Amanda xx
Ps sorry for typos - have done this on my phone.0 -
Thank you everyone. I'm moving on as I have to and currently I feel good. A few points on the above:
- you make great points Joy but I disagree with enough having been said on the issue - we live in a culture where death is swept under the carpet - stage 4 disease is much the same - exclusion from the broader breast cancer community is widespread (not everywhere). The 'survivors' of EBC are more generally focused on moving on, on breast reconstruction, life after breast cancer and it's hardships. We need to engage the BC community in active discussion about stage 4 disease. We need to stop hiding because we may upset and frighten people. There was a post on here recently about how someone would not come back because they had read about someone with stage4 disease! As much as I don't want to scare people, fear is a wonderful motivator.
The numbers in in the EBC community - we need them onside, advocating for a cure as much as we are. It's such a pity to talk about us and them. Since my diagnosis of Stage 4 I have been unable to find face to face support with other women - its all online ir hospital based. I've already grieved too many people but I also see so many stories of hope - thank god for the Internet or I would feel very alone.
AnneMaree - yes we do need to be advocates but to be brutal - we keep dying.
We are busy everyday just trying to stay alive, we know our time is limited so we choose to spend out time cuddling our kids and partners, having our chemo, seeing drs, managing side effects - I would love to be out there advocating more - I haven't been even able to take a holiday because I have until this week had weekly chemo - it's priorities and my family comes first, advocacy second.
I question the statistics - Joy help me out here. How much early detection finds cancers that could be stable inactive for years without treatment? How much does this skew statistics? What are the true recurrence rates? Why if they are so successful with EBC is stage 4 still incurable? Where does the money from fund raising go? I will be looking closer into this. I suspect a disproportionate amount is spent on education and awareness.
I perhaps hold quite a bit of anger about priorities in the BC community because of my status with this disease.
At the end of the day - as Joy said enough is enough, it is time for a cure! We can only advocate for this if the entire BC community unites in this cause and stops sweeping stage 4 disease under the carpet.
Amanda xx
Ps sorry for typos - have done this on my phone.0 -
Hi Amanda
I am so upset by your recent news - upset but still hopeful that the NEXT treatment will be the one for you. I think that is what we have to be - hopeful.
I agree that more advocacy needs to be done on research for stage 4 disease but like Amanda says we also want to spend more time with our families and loved ones.
It is so difficult being stage 4 - especially if, like me, there are no outward signs of the disease. I think a lot of people think that it's all OK for me now. They don't realise that the cancer is really widespread in my bones and that I live in fear that it is only time before it progresses to other organs in my body. I don't want everyone to be miserable all the time but I also don't want people to forget that I am living with a terminal illness and it is highly likely that I will die early because of it.
Anyway, I won't rant now (!)
Sending you all my positive vibes Amanda and make the most of those cuddles with your beautiful children.
Be hopeful always!
Amy xxx
0 -
Sorry I should have been clearer in my opening few sentences. What I meant (and I was trying to be nice and not get on my soapbox) was that there is enough awareness of Early Breast Cancer going on in the community thanks to the efforts of many brave women who have pushed this agenda over the past twenty years as well as Government programs such as Breast Screen and organisations such as BCNA, BCAG and BreCan, it's now time to shift the focus onto a cure for ALL of us. What starts BC in the first place? What triggers a return?
I agree with Amanda, the cancer continuum includes all breast cancer patients and those of us at Stage 4 should not have to become invisible to the rest of the breast cancer community because we represent their worst fears and can offend sensibilities. It is for that reason that I am out and about sharing my story and demonstrating that it is possible to LIVE with advanced disease.
It's true that screening programs probably pick up cancers that would resolve themselves and not cause any problem, however no-one can tell which ones will resolve and which ones need treatment, once diagnosis has been made the treatment begins for all, hence a skew in the statisitics. There is no way we can find this out as it would be unethical to do a clinical trial with a life threatening disease and allocate some women to the treatment arm and some to the placebo arm.
The discovery that breast cancer sheds cells into the bloodstream in the very early stages of the disease explains why I sat through chemotherapy with one woman who had been staged at 0, eight years ago and another woman who had been staged at 1B five years ago. Both had had the cancer return. Current estimates of the recurrence rate vary from below 20% to 25% to above 30%. Early stats were based on the 5 year survival rate, they are now being extended to 10, 15 and 20 years in some studies. There has been an improvement in data collection, these stats should be more accurate in the future.
We need to get this message out, there are those whose cancer will return despite anything they do or don't do, there are no guarantees, we're all in this together and we need to stick together and work towards a cure, if not in time for ourselves then for our daughters.
My heart goes out to Amanda and others with young children who need a mother's guidance, not just for a few more years but forever.
Tried to stay off my soapbox
With love
Joy k
0 -
Amanda and Joy,I couldn't agree more with what you have both said. Anyone with secondary breast cancer shouldn't be expected to be an advocate. Just day to day living with family and coping with ongoing treatments is enough. I think alot of women who get through treatments for early breast cancer just want to move on and forget about it,go back to la la land. What we all need to realize is that any one of us could wake up tomorrow with secondaries.We shouldn't be abandoning our sisters with secondaries but taking up" the cause" in whichever way we can.I think we need to question where all the pink money is going.The Mcgrath funds are going specifically to train breast care nurses and BCNA provides this website and other direct support to women with breast cancer - this we know- but what about ALL the other funds raised? where's it all going?
Seems to be more and more young women being diagnosed with bc. They should be enjoying life and children.I don't want this to happen to my daughters. I for one,am staying on this BCNA site to help others but also to maintain a united front.Power in numbers and by networking/sharing info we'll build up a formidable group. Ok,I'll get off the soapbox now!
Tonya xx
0 -
I am so sorry to hear that you didnt get the results you were expecting. I know what that's like...devastating! You have to have hope though, that this next treatment will be the ONE for you....because without hope, we have nothing. It's time for your treatment to take a detour...that's all. Your body is craving something new, so a new treatment regime it shall get!
Together we will embark on a new journey Amanda, filled with hope. I am holding your hand from a distance, and we will face this demon head on, with determination and courage! We have to believe the best is yet to come....for our sakes and for our children's sake.
Like me, you have a new plan of action...let's have faith that they will both work and blast this pesky disease to smithereens! Take care and keep up the good fight! Love Celeste ?
0
