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TNBC with lung metastases - treatment due to Covid 19

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi

I’m having my treatment at RHCH in Winchester. I only had a biopsy as they said the lesions looked unusual for breast cancer in the lung. I have 5 lesions/tumours measuring from 4cm to quite small. They needed to do a biopsy to confirm. They actually told me 2 weeks ago that it was lung cancer but the phone call yesterday confirmed it’s the breast cancer that’s spread. 
Big hugs 

Xx

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi funkyscot

So sorry to hear about your diagnosis too.  They won't biopsy me because of Covid 19 and say that it's obvious enough from the CT scan that the TNBC has returned to my lungs.  I am waiting for pathology to tell me whether my primary cancer was PDL1 positive which determines eligibility for immunotherapy, but again I've been told that's not available at the moment either.

I've been talking to another lady who has done really well on iv Paclitaxel with TNBC mets since June last year so fingers crossed for the same for you.  I don't have an issue with starting on oral chemo if other options will still be available to me after - I just have to ask the question.

Can I ask you which hospital you're under? It's just frustrating that we're being offered different treatments for the same diagnosis.

Good luck with your treatment.

Hugs, Deb x

 

 

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi. i am very similar. Finished treatment for tnbc in June 2018 then I found out yesterday that It has returned in my lungs. I’ve been told that I will be starting weekly iv paclitaxal next week. Seems they tested my lung biopsy for something that might have meant I could try an immunotherapy but it didn’t fit the profile needed. Another blow. 
I’m 47 with an 11yr old daughter and 15yr old son. Can’t believe I won’t see them grow up. 
Sending you good vibes and good luck. 

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Re: TNBC with lung metastases - treatment due to Covid 19

Thanks again Jencat xx I've joined the private secondaries group as it was suggested that would be a good place too. Deb xx

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Re: TNBC with lung metastases - treatment due to Covid 19

Thank you Pam x. I've joined the private group and posted today. I hope you stay well until you can start your next treatment. As you say our cancers are all different. That must be very hard not being able to see the baby. Lets hope this wretched CV clears off soon. Deb xx

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Re: TNBC with lung metastases - treatment due to Covid 19

Sorry about strange formatting in that post- fat fingers I think! Pam

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi , the forum is very helpful, once you get the hang of it.  I have found it's best to mention tnbc, mets and their location as we are a smaller group and treatments vary with type and location. My other posts may have been in the secondary private group which you have to request to join-lots of specific info here. Plenty of info on Capecetabine under chemo section too. 

I have had some lung nodules since diagnosis in 2017. I had chemo, mx and rt . I was given Capecetabine  but it was stopped after a week becos of bad side effects - most people tolerate it well but it affected my liver function,   maybe an enzyme issue. I then had over a year treatment free, with 3 monthly ct scans to check for progression which happened  at the end of last year. I did not have any lung symptoms. I had a lung biopsy in Jan to confirm phenotype as I originally had 2 types - never do things  by halves - this confirmed multiple small tnbc mets in lung tissue and pleura . Knowing the type was meant to dictate the treatment plan, including possible trials but that  all  went out the window  with the virus. 

So have decided to wait before trying any more chemo. My mets are not growing as aggressively  as some tnbc so I've taken a chance. I was hoping to go for a second opinion, maybe privately,  to try metronomic as there have been some very encouraging case studies, particularly for over 70's like me but  my onc was very dismissive of it, hence looking for another opinion.

Sorry if this is a bit long winded but everbody's cancer is so different and we all respond differently so you do need Info before you can decide if its relevant to you too. I hope you find some answers and reassurance here - you'll find lots of survivors with good advice. I did! Stay well. Pam x 


@DebR wrote:

Hi Pam

Thank you so much for your message x.  I can't find your other post?  It must be me but I'm finding navigating the forums quite overwhelming and the search function pretty useless?!  I read some posts from January the other day from 2 people about MC/immunotherapy, one of which I thought might be from you (?) and now I can't find them at all!  Perhaps my cancer brain is returning?! I recognised your login name as I'm a new grandma and have only just started looking after my gorgeous 8 month old grandson 2 days a week and am now absolutely devastated that I have no idea when I'll even be able to see him again.  Added to that my dread is that this horrible virus is going to hamper my chances of a few more years with him.

Sorry to sound so morbid - it's early days for me to get my head around what has happened. I naively had no suspicion that my 5 week cough was going to be the dread TNBC returning especially as it came on after a cold.

Anyway I hope you don't mind me asking but from what you said do I take it that you have had Capcitabine since being diagnosed with lung mets?  I'm sorry that it hasn't worked for you but it gave me some hope that you were still due to start on MC.  I was worried that there would only be one go at trying to keep this ghastly thing at bay - I'm thinking too far ahead I know before even speaking to my onc!

Also how are you feeling? My onc has asked me to keep a diary of how bad my cough and breathlessness is.  My cough has been the worst thing as apart from being exhausting it has made my ribs so sore but is getting slightly better since taking codeine although I'm only taking 2 x 15 mg at the moment as I'm worried about the side effects. I hardly notice any breathlessness - just slightly when I walk upstairs. 

Sorry for such a long post and so many questions! Deb xx



ps not getting  a hug from grand babies is the worst part - we have a 2 week old grandson!! 

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Re: TNBC with lung metastases - treatment due to Covid 19

https://forum.breastcancernow.org/t5/Chemotherapy/bd-p/4435

 

This is the link to the Chemotherapy part of the forum x

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi Jencat

Thank you so much for your reply x.  I'm basically jumping the gun a bit as I haven't spoken to my onc yet but just wanted to get as much info together beforehand.  Reading Newgrandma's reply it would appear that oral chemo is the only option at the moment with CV and lung mets but she has given me hope that if the oral chemo doesn't work then yes there is the option to try something else, once CV has hopefully gone away!

Thanks also for your suggestion about posting on the chemo forum.  As I've mentioned to others I don't know if it's me but I found all the threads quite overwhelming and am struggling to navigate around.  I fear my cancer brain is taking over again but hopefully I'll get used to it!

Good luck tomorrow and with the rest of your treatment.  I also read on here somewhere about a new TNBC drug being trialled so hopefully that might be another option for both of us in the future.

Keep safe and stay well, Deb xx

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi Pam

Thank you so much for your message x.  I can't find your other post?  It must be me but I'm finding navigating the forums quite overwhelming and the search function pretty useless?!  I read some posts from January the other day from 2 people about MC/immunotherapy, one of which I thought might be from you (?) and now I can't find them at all!  Perhaps my cancer brain is returning?! I recognised your login name as I'm a new grandma and have only just started looking after my gorgeous 8 month old grandson 2 days a week and am now absolutely devastated that I have no idea when I'll even be able to see him again.  Added to that my dread is that this horrible virus is going to hamper my chances of a few more years with him.

Sorry to sound so morbid - it's early days for me to get my head around what has happened. I naively had no suspicion that my 5 week cough was going to be the dread TNBC returning especially as it came on after a cold.

Anyway I hope you don't mind me asking but from what you said do I take it that you have had Capcitabine since being diagnosed with lung mets?  I'm sorry that it hasn't worked for you but it gave me some hope that you were still due to start on MC.  I was worried that there would only be one go at trying to keep this ghastly thing at bay - I'm thinking too far ahead I know before even speaking to my onc!

Also how are you feeling? My onc has asked me to keep a diary of how bad my cough and breathlessness is.  My cough has been the worst thing as apart from being exhausting it has made my ribs so sore but is getting slightly better since taking codeine although I'm only taking 2 x 15 mg at the moment as I'm worried about the side effects. I hardly notice any breathlessness - just slightly when I walk upstairs. 

Sorry for such a long post and so many questions! Deb xx

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Re: TNBC with lung metastases - treatment due to Covid 19

I forgot to say DebR, I suppose it might also be worth posting on the general chemo thread as well to see if people on there can help you x

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi Deb, I don't know if I can give you much advise, but just wanted to let you know that you're not alone and the lovely people on here will support you.

I was diagnosed in June '17 with TNBC and had a WLE followed by chemo and rads. Unfortunately I was diagnosed with bc again in Jan with a small spread to my sternum. I'm currently on IV chemo-I've got my 2nd cycle tomorrow. I'm feeling anxious about that being able to continue with cv, but the chemo nurse was very reassuring last week when I spoke to her about it, but of course in the current climate there are no guarantees.

I can understand your worry about not being offered the best chemo for your lung mets. Could you have the tablets for now so that you.don't risk having to go to the hospital, but pursue other options once the cv crisis has lessened or maybe ask for a 2nd opinion. I'm going to try and get a 2nd opinion on my treatment options for after I've finished chemo x

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Re: TNBC with lung metastases - treatment due to Covid 19

Hi debr, 

sorry you find yourself here, especially now when it's difficult to get any Info, let alone make a treatment plan. I posted on here a few days back, in the same situation -see coronavirus -a rock and a hard place.

 

gov/ NHS guidance https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/Specialty-guide_Cancer-an... seems to put us at the back of the queue . My onc told me that were I to get the virus and need hospital treatment , I would be unlikely to get a ventilator if I needed one becos of my lung condition. I have  numerous small tnbc mets in lung tissue and pleura and would have been looking for a trial/metronomic chemo to start this month. All trials in London and Kent have stopped becos virus would screw the results.

I decided to wait for another 3  month scan and check progression rather than start chemo now and risk getting the virus with a lowered immunity. Capecetabine is an oral chemo which a lot of us have success with but it didn't work for me so I would have been on a 3 weekly hospital visit for infusion. The best thing for me is isolation to avoid the virus and hope the cancer doesn't  get me first!

So sorry ,I'm not much help except to flag up that you're not alone! Hope you find some answers - do please post  if you do. Hugs and best wishes pam x 

 

 

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TNBC with lung metastases - treatment due to Covid 19

Hi everyone - I'm new to this so not quite sure what I'm doing, so I've posted in a few places!

 

Having finished chemo and RT for TNBC 2 years ago I now have the scary diagnosis of lung metastases.  My oncologist is calling me on Wednesday to discuss treatment options but my Macmillan nurse thinks this will be oral chemo so that I don't have to attend hospital due to Covid 19.

Knowing the poor prognosis for my condition I have done some research online and read about the CT7001 (Carrick) trial and metronomic chemo (MC) which I understand to be a lower dose of chemo combined with immunotherapy.

When I mentioned both of these options to my nurse she implied that neither were an option due to Covid 19 as the important thing is to keep me safe and oral chemo would mean not having to visit hospital.

Obviously I need to discuss the options with my Oncologist but my worry is that oral chemo may not be the best treatment.

We are obviously living in scary times which makes my diagnosis even worse. I would love to hear from anybody who may be going through any treatment for TNBC metastases to find out how you are getting on.