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TNBC Stage 4 with Fungating Tumour

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Manchubby View Drop Down
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    Posted: Mar 20 2017 at 3:32pm

Dear all,

I have been a lurker on this forum for almost two years now, since August 2015 to be precise when I found my wife had been diagnosed with TNBC. Fast forward two years, now at Stage 4 with treatments rapidly running out Iā€™m posting here to ask for any options that you may be aware. Whilst the nature of my writing may not show my desperation, I hope by reading the case history you can empathise.

To cut a long story short (!) the details are below ā€“

Pre July 2015: In perfectly normal health, no history or family history of any major illnesses

July 2015: Hard lump noticed on left breast

August 2015: Aged 33, diagnosed with TNBC. About 5cm lump on Ultrasound, Stage 2 (?)

August 2015-October 2015: 3 rounds of neo-adjuvant Epirubicin-Cyclophosphamide (given every 3 weeks). Partial response as the tumour appears to shrink (read further below). BRCA Negative confirmed

October 2015-December 2015: 9 rounds of Paclitaxel

February 2016: Lumpectomy. Tumour size had reduced to 1.2cm but 8 out of 14 nodes positive

March 2016-May 2016: Xeloda

June 2016: MRI scans showed disease had progressed to spine, mediastinum, liver. Stage 4. Progression also in left breast

July 2016-Aug2016: Enrolled in a clinical trial using Keytruda (Pembrolizumab). Had three rounds but had to withdraw from the trial due to disease progression. Had 5 sessions of radiotherapy on the spine. In extreme pain by the end of the trial due to loss of mobility in left arm. LDH shot up to 7000+

September 2016- January 2017: 6 rounds of Gem-carbo and sometimes just carboplatin. Disease showed regression in liver. Spine mets stable after radiotherapy.  LDH decreased to 900+ but after December 2016 unfortunately disease in the breast kept progressing to superclavicle on left and right shoulder after January.

February 2017-March 2017: Went back to two rounds of EC as it had worked first time around. Terrible side effects ā€“ severe weakness, neutropenia, pain. Tumour in the left breast began fungating very badly. Have to change dressings every day on open fungating  wounds mostly by ourselves (me and her sister). Severe mets under left armpit causing loss of mobility. For pain relief on regular doses of Diazepam, Pregabalin and Oxynorm (although only Diazepam seems to work best out of the three). Pain and loss of mobility on right hip now, suspected cancer spots there after X-ray. Had 5 sessions of radiotherapy on left shoulder to relieve pain. Plan to have 10 rounds of radiotherapy on fungating tumour on left breast  and 1 round on right hip w/c 20/03. Tumour biopsy from 2016 sent for Caris Life Sciences test, results awaited.

So in summary she had some response to EC in 2015 but not in 2017, responded to Gem Carbo but now stopped. No response to Taxol, Xeloda, Pembrolizumab (or  trial stopped due to disease progression before response could be achieved). We know the option that is left to try after radiotherapy is Eribulin, but the oncologist is not very hopeful this would work because she had no response to Taxol and Eribulin operates on similar mechanism.

Any other options or alternatives you can think of please?

We have been together for nearly 14 years and I am desperate to find any treatment options that would work for my wife.

Thank you all and I genuinely wish all of you the very best in your treatments as well.

 

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2017 at 9:35pm
Manchubby,

I'm so sorry to read about your wife and all that she has been through.  I really don't have anything to offer, but wanted you to know we are glad you shared her story and you sound like a loving, supporting husband.  Did you ever get the results of the Caris Life Sciences test?

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Manchubby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2017 at 12:37am
Thank you Donna. I had a feeling that you would be the first to reply back given your proactive status on these forums!

Regarding the Caris tests the results are expected early April.

Best regards,

Manc-hubby
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Tulips View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2017 at 7:51am
Oh Manchubby,

I, too, am so sorry for what you all are going through.  I am heartsick just thinking about it, and sending all my prayers and positive thoughts your way.  I wish I had some answers for you, but I doubt I have anything you haven't thought of (keeping an eye on all possible clinical trials, second opinions).  You also want to take time to enjoy each other and each day, because I pray she gets through this, and when she does, you want to know these months weren't 100% consumed with medical issues and had some bright spots, too.  Your devotion is evident and must be doing wonders for her.  I hope you are caring for yourself, too--its so difficult being the caregiver as well.  Keep asking questions--hopefully someone will have useful ideas for you.

Take care,
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2017 at 8:24am
Manchubby, I am so sorry to read your story and all that you and your wife have been through. Like Tulips, I hurt for you both, deeply and know that I'll keep you both in my prayers. I can't add any other suggestions on possible next steps. Tulips is right in reminding us all to savour each day and to be sure that you also take care of yourself. Asking questions is a good idea. Wishing you all the best and know that I'm praying for you both, Jacklin
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2017 at 8:40am
Thank you Tulips and Jacklin. Your kind words are very much appreciated. At the moment we are waiting for the radiotherapy sessions to start in the next few minutes. Been advised symptoms will get worse initially before they get better. Not sure we can take any more but will keep fighting. We are in the UK and if any of you in the USA are able to provide information on IMMU-132 it would be very helpful. I keep abreast of it through Google News. I can't wait for it to get fast tracked by the FDA not just for us but for the potentially thousands of metastatic TNBC sufferers.

Best wishes to all of you,

Manc-hubby
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2017 at 9:50pm
Hey Manchubby,

Just wanted to chime in and say I'm praying for you guys. My wife, age 34, was diagnosed in April, 2015. She also has TNBC, but is BRCA 2 positive. She went Stage 4 in April, 2016. We have gone through the following:

Adriamycin/Cytoxan
Taxol
Xeloda
Carbo/Gemzar
Gemzar
Starting Halaven this week.

Keep up the fight....very few know the real meaning of the vows "for better or worse, in sickness and in health". My thoughts are with you.

Brandon.
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Manchubby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2017 at 2:47am
Dear Brandon,

Thank you for your post and likewise I will pray for you both. Although its probably the most dreadful disease I feel it is getting far too common like the seasonal flu amongst women. How remarkably similar are our wives' cases apart from the BRCA2 status. Please also keep an eye out for clinical trials for her and I too shall keep you updated about my wife's treatment At the moment she is undergoing radiotherapy only until another week or so. She has been having high fevers consistently and we can't identify any obvious sources of infection apart from the cancer itself. So she is in hospital taking antibiotics as well on top I wish your wife the best with Halaven. For what it's worth I have heard its a milder chemotherapy. Would be very interested to hear how you guys are coping, even if you want to talk via private messagibg. I will also let you guys know if we find anything useful from the Caris tests.Take very good care both, be strong and keep in touch.

Best wishes,

Manc-hubby
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2017 at 8:19pm
dear ManC: I'm  sooo sorry your wife hasn't responded well to the available therapy drugs. I wish I had an answer for you two, my wife has had some genetic tests in case she has a recurrence, I expect it would be hit'nmiss, since she has exhausted most of the drugs your wife has... I'm  so sorry and I can relate to your situation, I just wish I could help more.
G.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2017 at 4:24am
DearGordon, thank you and I pray your wife never has a recurrence. We had further bad news yesterday from the CT scans. Will spare the details but she urgently needs pericardial and pleural effusion. Disease progression is continuing elsewhere. I find it unacceptable that in the 21st century neither is there a 'cure' nor can they tell us what caused it. All our wives seem to have been prescribed a standard set of chemotherapy drugs which have a less than 20 percent success rate. The very definition of madness isn't it - trying the same things over and over but expecting different results?! I'm sorry I'm not being pleasant today but I really wish I had studied oncology myself. Maybe I will just yet. All the best everyone.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2017 at 10:05am
Dear Gordon,

Thank you for your thoughts and concern. I can tell you're a good man and your wife is lucky to have you. By pericardial effusion I mean the process by which fluid is to be drained or effused from the outside of the heart. Quite a lot has gathered there from the cancer and chemotherapy. Similarly by pleural effusion the process by which fluid is to be drained or effused from the lining of the lung. Over the past 3 days they have drained 3.7 litres, yes litres, of fluid from outside of the lung. The lung had collapsed under the sheer weight of this god foresaken fluid. Normally draining the fluid should provide relief with breathing but unfortunately due to the mass of cancer on the left breast she is having not much positive effect. They have decided not to drain the fluid around the heart just yet. Fresh cancerous hell has been detected on the lining of her heart, lungs, liver and top of the spine. All treatments are now aimed at pain relief than systemic therapy. We won't benefit much from Eribulin/Halaven at this stage we have been told. Preparing for end of life now whenever that may be, but is likely in a few weeks at best. For what it's worth the radiotherapy which superficially targets the fungating tumour on her breast seems to be showing some signs of improvement. The whole area is an abomination on my most beautiful wife and caused her so much distress every day when we change gauzes. We also started CBD/canabidoil to see if that help with any of the pain relief. But we are now praying for a peaceful ending to our worst nightmare anytime soon. 

Manc-hubby 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2017 at 12:36pm
Dear Man-hubby,
I am so unbelievably sorry and sad to hear what you are going through.  It is truly a nightmare.  I am sending all of my prayers your way.  
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2017 at 2:15pm
Dear Manchubby, I am at a loss for words to read of what you are both experiencing at this time. My heart hurts for both of you. Know that I'll keep you in my prayers. Much strength for each moment. Jacklin
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2017 at 6:49pm
Dear Husband, I just want to add my prayers for you and your beautiful wife. Having you by her side is what counts so much, and you are a wonderful example of what every husband should strive to be. I will continue to pray for you both. I am so sorry; no one should have to go through this and it is beyond our understanding.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 6:17am
Dear all, I thank you all for your kind words, support and prayers. People like you help me keep faith in the goodness of the human spirit in a world filled with war and disease. I must say though that I do not deserve sole credit for looking after my wife. She has a wonderful sister who is doing more than me to help her with everything. We will keep doing it until the inevitable happens. I wish you all the very best and my prayers for your wellbeing too.

Manc-hubby
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MikeW Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 11:45am
I pray for you and your poor wife, she's endured so much so far. My wife was 100% estrogen positive but after one year NED it came back as triple negative. She's taking Xeloda now. Too early to tell if it works. What we all fear the most is when nothing works. They throw everything they've got from Taxol, to AC to Xeloda and nothing will stop this monster.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 1:00pm
Dear Mike,

Thank you and likewise my best wishes to you and your wife too.

There are a couple of things I would say - there are far too many subtypes of TNBC and people can't really yet tell which one is which. Some being more chemosensitive than others. TNBC is just a broad name for a variety of subtypes.

Secondly whilst given our experience with chemotherapy I'm very sceptical, but I hope it buys time for your wife, long enough for something like IMMU-132 to be readily available for prescription.

That my wife would get some sort of stability until we could get a good run at a immunotherapy treatment was always my hope. It needs time, say 12-16 weeks typically to gauge if it has worked. We tried the trial but stopped too soon due to progression on Keytruda.

Not to be for us with immunotherapy but maybe someday for someone else like your wife. Hang in there.

Best wishes,

Manc-hubby
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MikeW Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 2:19pm
Thanks, Manc-Hubby, best wishes.

Here as a link is a US Government site with 146 pages of Triple negative trials and phased studies. Somewhere within these 146 pages are a few triple negative trials with something that really works.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 5:26pm
I'm so sorry , I know the TNBC mets to lung are bad, I would not be a friend, to not say to ask for assistance to prepare for the worst. I have tried to prepare myself for that someday, where drugs don't work, and I need to be strong.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 6:41pm
Thank you gents. Mike, hope there is something in those trials. But we are in the UK not USA. We thus have to wait for you to sneeze before we catch a cold here. Gordon, mets to anywhere is bad news really. Maybe bones are a bit better than to other vital organs but its small consolation relatively.We are so far ok support wise and still in hospital. Still discussing whether we are better off here, home or in a hospice. Whatever is most comfortable for my wife really. Best regards, Manc-hubby
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