Shadow in chest is recurrence
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Your inner strength is shinning all over this thread as evidenced by the women who are responding and wishing you well.
You have strong instincts - trust them.
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I think the time before the treatment plan is in place is the hardest. Once your plan is in place, you'll plow forward. (((Hugs)))). Hoping you have a plan soon
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Got back from clinic. They are recommending Taxotere, Herceptin and Perjeta. 6 x Taxotere and the other two on going.
Rays of light in one place so far. It isn't operable though and too close to vital blood vessels for cyber knife. Apparently having 6 years interval also positive but I feel like I'm scraping the barrel for any hope.
I feel like my world has come crash g down, I start in 2 weeks. Can anybody chime in with their thoughts.
Liz
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Hi Liz - I had 6 rounds of taxotere aka taxo-terrible - it's a strong IV chemo, but that may be just what you need to knock this met out. You will lose your hair, so be prepared, unless you use Cold Caps or the like which insurance does not cover. You may need a port - ask your onc about that. Do you have someone to drive you to chemo? You can't drive yourself with this stuff and will be tired during the week. How often are they planning the taxotere - mine was every 3 weeks. But you can get through this, and then switch to Herceptin since you are Her+. Stay strong, you have many savvy ladies here.
(()) Claire
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Hi lalady1
Thank you for your info and support. I had this chemo 6 years ago. It is the first infusion that worries me as I had an allergic reaction. Red face, tightness in throat. They stopped it and added more Piriton and I proceeded with it and the remaining 5. It's the anxiety with me. I wasn't sick, no mouth ulcers or neuropathy- the latter terrifies me. Is it permanent.
They are throwing everything at it because I'm young and it's in one place. There is an alternative- weekly Taxol but it's effect not evidenced based even though it's easier to tolerate.
L x
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You live in the UK. If you don't like the options given to you by the oncologists, consider going to Germany for Coley's Toxins. (I imagine it would be out of pocket for you). It is not a mainstream treatment, but is given in Germany, Sweden maybe (I forget), and Chipsa Hospital in Mexico, with a higher success rate than USA chemo gets. Also, consider reading Chrisbeatcancer.com. These are two alternative suggestions. Take it or leave it. Hoping you do well with whatever road you take.
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morning -
Taking child to school ...will write more spon
Cautious and conservative but aggressive would be my comment - I know you dread chemo ...
How did you feel about him/her?
You still have two more opinions to come in.
Hugs
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soon soon...😊
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Hi
I liked the onco- my husband and I were there until nearly 7pm.
It's not operable or rads because it's close to vital blood vessels. This may change if it shrinks and then rads could take place. They will scan after x3 chemos.
I've had Taxotere before. First one had reaction but completed the other 5 and I believe anxiety was a major problem. I didn't actually get some of the side effects like neuropathy.
I think I will pay to have the first treatment privately in Manchester and the rest on Nhs. This chemo is part of the Cleopatra trial and gold standard for her2. Don't know whether it's more serious because of spread to lymph nodes. They seem pleased it's nowhere else, but will do a bone scan.
I could have Taxol weekly which they even give to patients in their 80s but want me to do Taxotere, I think because I'm young and they see it as necessarily aggressive. I wonder though about Q of L. If median life expectancy is 6 years??
I'm ill again with this mentally. I knew it would be chemo but reality is kicking in. I think I can only do this if I go to this clinic in Manchester where I can be constantly monitored, stay over night etc. chemo 1 is Taxotere on day one, followed by the other two on the following day.
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Hi jackboo
Big huģgys i have been following your posts..its a great feeling that you have a positve treatment plan and that you are pleasedwith meeting your MO . I like the posts on... thin slices of joy ...super hints and calming stories to make us slow down and be in the moment.all the best to you and family..Bright
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Liz,
You have been very traumatised and shocked by this diagnosis and those reactions are completely understandable and to be expected. Would you consider getting some meds to help calm you a little? just to give you a bit of head space. I am sure you must feel exhausted and very frightened as you negotiate cancer once again. Macmillan may have some one you can see to help you get through the medical stuff again and someone to talk to about how you are feeling and to help with that.
I saw a oncology psychologist on Tuesday in Huddersfield and I found her to be very good. This was at the macmillan unit. There will be equivalent in Leeds/Manchester. I just feel you could do with a little support emotionally. .
Gx
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Hope you are asleep by now!
It's going to be a tough week and facing chemo is ...well it is what it is, but it's doable.
Good you like the onc - very important.
JeninMichigan posts are very inspiring - she was diagnosed 2007 and has been rocking NED with stage 4.
My understanding is that it is liver and brain mets that make the oncs most uncomfortable but everyone's beast is different.
Try and take care of yourself as you go through this - go for walks and eat a colourful rainbow plate three times a day.
Feel free to punch me in the face but I am about to tell you about the benefits of home made Greek yoghurt ( no I have not lost my marbles at the rads) - the gut biome is an essential part of this freaky puzzle - huge immunogenic potential - Genesis Laboratories culture starter - or at least a decent probiotic.
I can post the studies but I will leave for later - bigger fish to fry - just eat yoghurt as above.
Finally do not project yourself too far forward - try and stay well one week at a time and if you want to think afar try and keep your planned August holiday ( see I do listen 😊) - they should be able to work around it and it will do you a world of good.
Let's see what the rest of the week brings.
I am wrapping rads and crazily purging in an effort to simplify our lives so I can manage work and child as I return. Very satisfying relationship I am building with the op shop ladies - soon I will be asked in for a cup of tea - hopefully it will be green!
Favourite op shop in the world for me remains one in Oban - the most glorious views over the harbour and right next a pub that sold divine counter meals
Liz I know you are facing chemo - all here.
Ioana
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Hi both,
Thank you so much for replying. It truly helps. G- I am definitely going to need some support. Tried to get Richard to stay home tomorrow but he will be with me through every treatment and so has to go to work at some point.
Ioana- will buy some Greek Yogurt and eat a fair amount of different colour food but could do better. I will have to get used to having to eat through no taste so it might as well be healthy.
I'm freaked out by all this. Perhaps I was hoping for local treatment but in the end systemic is what they need to do.
Is there a thread for Stage 4 starting chemo, so many seem to be on hormonal treatment only. I am been given the hard stuff. It's hard not to see that as a worry.
Right now I wish I could just go to sleep and not have this to face but I owe it to my family to try.
I hope you'll stay with me ladies. You do help and it's a big ask but I would appreciate the support.
G- getting a psychologist but she is currently on leave.
I- I have done T before and I got through it! Will it shrink it though, heard good things about Perjeta. Can't seen to find anyone currently on this regime.
Liz x
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Liz - there is a Perjata Stage 4 thread, so hop on it. I truly understand the anxiety of going back for more Taxotere - I became allergic during round 3, so they added more steroids to tolerate and finish the protocol. Anything near your chest wall is tricky, so please get some some anti-anxiety meds. I took ativan which helped a lot, maybe xanax works for you? Get these ordered asap. You need to be cocooned.
Look at all the lovely ladies here to support you. And we are not leaving you.(()) Sending sunshine from California
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Sending more sunshine from California! I've been following you, Liz, and I wanted to chime in and let you know I'm cheering for you and praying for the best. You can do this. One day at a time.
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Hi ackboo09.
I don't have words of advice for you but I wish you well and, although you may not think so, I think you seem to be handling things very well. I live in Canada but am a Lancashire Lass and have very fond memories of visiting relatives in Stainforth when I was young....it was always an adventure going to Yorkshire. And I know Yorkshire folk are tough! 😀My dx is similar to your original dx except I was not HER2 positive. Can I ask if you did Tamoxafin or an AI at all, and, if so, for how long.
Take care and be well 💕💕
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good morning Liz,
We are all here.
When you can, tell us what are you going to do today??
Do you have a break from the onc?
This is for when you go to London/Manchester - might be worth asking about.
http://biocept.com/
It is not available direct in UK and Australia - but can be ordered by onc and I think the price is in the hundreds US - it involves bloods/ FedEx sent sample and may give give an idea of circulating tumour load and receptors.
I had earmarked in case something crops up in the future...I have emailed them through their site and they were very quick in response.
After our talk about cold caps - I think I have changed my mind - should I ever have to go through chemo again - I think I would cut my hair short and use cold caps - in my case I believe it would make it easier for my family.😊
See learning all the time.
Hugs aplenty
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Morning Ioana,
So glad to see you are staying with me just now. Last night was awful,sobbing and not able to get a handle on any of this. Facing this chemo in particular is behind this latest meltdown.
Waiting to hear from Manchester. I have decided to have the first treatment here for a number of reasons:
Onco said the first Taxotere can be the worse in terms of an allergic reaction. 6 years ago my throat tightened and they stopped it, adding more Piriton. I then continued. So my rationale is this: at Christie I will have continual monitoring and privacy. I can opt for my own booth or to sit with other patients.
I will need Perjeta and Herceptin the next day and so will stay over night ( with Richard) and resume treatment on day 2. This won't be a cheap option and I have yet to determine costs. However if I can have treatment one in a more nuturing environment then I think it might help me face it.
Going to call the clinic today and ask for costs. They have now had my details for 6 days!
Took your advice and visited the a thread relating to this treatment and was uplifted by their strength. Hopefully they will reply to me.
Cold caps- 50% success rate. I understand where you are going in terms of trying to limit the shock to family. My children have been through it before and that makes it easier. At the Christie there is a wig service and even counselling available. I could easily just live there for 18 weeks- ha! Going to a different setting really appeals but in reality I will have to return to NHS where I had fantastic care; but for me it's revisiting that setting. Does that make sense?
I am so pleased that you are getting your life back now Ioana. There is an optimism in your post and I am thrilled for you. This return to normality is what all of us battling this disease aim for. I look to ladies such as Fitztwins and JeninMichigan and it can happen and they are enjoying life,
Love n hugs
Liz
P. s 6 years on Tamoxifen my friend.
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JackBoo I'll join you on the IV starting chemo if we make/find one.
After a night of restless-then-no sleep filled and followed by waves of emotions shattering to the core I picked up some ativan yesterday. Didn't take any yet since idk how it will go and I have to leave soon for PET/CT.
Your "in one place" is definitely good news from my understanding. My MO showed my two possible paths, one for "one place" (he says unlikely) and the other with "multi places" (pending PET/CT)... different tx but chemo in both cases. I think you have an excellent shot at beating this back for a good long while.
You are young and strong and this is NOT what you thought would be having to deal with but I think as you adjust you'll be gearing up to get through it all ... with family to support and buoy you, and to show you every day why you must do this. There are no "good" options; I cry for you. But you'll pick the one that seems/feels less awful for some good reasons, and you'll get through it.
I hope you can tame your terrors. Idk about the meds (worth a shot; many swear by them) ... There's also many many meditation/relaxation tools out there. I think these are the "more healing" approach, jmo. I'm going to try when I can take a moment to find something to try ... meanwhile deep breaths ... not dissing or tossing the meds though. I hope for you that you can channel your intensities into fighting off the beast; make all that energy work *for* you...
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Liz,
not going anywhere - will stick
Go really easy on yourself for the next few days. If you can manage a few hours not thinking about it that would be great - for me the way to do that was through my son.
I did two weekly full dose Taxol and was prescribed horse doses of dexmethasone 20mg previous night and then again an hour before the infusion plus a Loratidine 10 mg with each.
Lorazepam is useful and in acute anxiety setting you should not worry about tolerance/addiction etc.
Zopiclone is something you could take ( I took ) for sleep only ( not a BDZ so not the above) - comes in 7.5mg but I am getting the feeling you are of slight build so cut it in half 3.75 - might be plenty.
Start collecting all your medical data.
Start thinking of the people who treat you as your team - keep an eye on key players and people that you might want to add - for example now a good GP with Breast Cancer experience and your psychologist, after chemo or when you get more energy an integrative oncologist opinion/nutritionist/ maybe a yoga class.
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Source: Columbia University physiatrist Dr. Loren M. Fishman
This was originally posted by Heidi then Z on one of the Stage 4 threads - it works for me and take about 20 minutes maybe 25 ( 6 breaths per pose roughly) - I am really relaxing with it. Good stuff - it's apparently great for bone density - but you have to chase Z post on the science behind it.
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have you looked into Proton Radiation
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Hi, Liz - I imagine you're sleeping now but wanted to send some support.
Your comment about revisiting the site of your previous treatment makes total sense. I don't mind mammograms but can barely stand to see the breast centre where I was dx - much less sit in the waiting room. I think that most/many of us have some PTSD and returning to those trigger sites is tough. Wouldn't it be nice to walk in and find that the walls have been painted a different color or the furniture's been changed?
Hope your children are doing well on their exams this week and that tomorrow is an easier day.
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Jackboo, drink lots of water.
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Morning to everybody
I am due to start THP chemo in 2 weeks because this is the standard of treatment for Her 2 mets even though the biopsy was inconclusive for Her2.
Trying to drink plenty of water, exercise and lower stress levels.
I have also posted on the Herceptin/Perjeta thread in the Stage 4 forum.
Your support following me after I first posted " shadow is recurrence " had been amazing.
Liz
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Hi Liz,
I don't know enough about it - but given your presentation, age and receptor status it might be worth asking about in Manchester - another way would be to contact Nicholas Turner directly - most of the researchers will respond or have someone do so on their behalf.
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hi Liz,
Hope you had a peaceful week/end
Lots of healing vibes:)
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Hi
I had a nice weekend with sunny weather and family. I'm nervous, seeing a wig specialist Tue afternoon and the appointment for second opinion in London is Wed.
Hope you are well.
L x
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yes thank you...:)
Let us know how London turns out?
( I wore a wig for certain events in the last six months - same cut/colour as my previous hair, people did not notice, I was self conscious at first but then I just got on with the tasks of the day - I learned to smile more
I get more looks now that my hair is short.
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Hi Liz, maybe a lovely human hair wig would do the trick. I bought a back up wig similar to my original hair length/color and like Wildplaces no one really noticed. Please keep us posted on how London turns out.
Claire
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