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TNBC - anyone on Plasma Match trial or on Olaparib

35 REPLIES 35
Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Ella,

im so sorry you have lost Christine to this b... disease. I hope you have some support from friends and family and can find a way thru this difficult time. It may be some comfort to think that Christine has not left you, she is just out of sight now. She is still with you in the love and memories  you shared.

This is something we cancer ladies try not to think about but sadly, it will catch up with most of us sooner than we would wish it to. 

God bless pam x

draytl2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

I’m so very sorry for your loss. 💔

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi all

I'm absolutely heartbroken to tell that Christine passed away Friday 12th February with me sleeping right by her side.

Thank you all for your chats and support 😊

I wish you all the best in your journeys and that you keep as well as you can for as long as you can.

 

Ella

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Dear Ella,

So so sorry to read your post. This must be so distressing for you both. I hope Christine has whatever she needs to make her comfortable and that you BOTH have practical support.  As a long term carer for my parents, before my cancer diagnosis, I know just how hard it is and how helpless one can feel at times. But it is SO important to take care of you too, physically as well as mentally. I hope you have someone who can be with Christine while you take a break, even a 20 minute walk in the snow will help. And take any help that's offered, whether practical like shopping, collecting meds or emotional support, even if its just a good hug. It can be hard to sleep with so much to cope with so please look for help from your GP if necessary - if you're like me, taking meds yourself is not what you want but it's just to help you through this difficult time.

 You don't say if you are working - I hope not as that might be pressure you don't need.  It's almost impossible to look after someone you care about unless you have had some sleep, some nourishing food and have someone to share the load. And don't be afraid to let it out once in a while, a good cry, screaming into a pillow, or coming on here to share - it's all valid if it helps and you know that we will understand.

We are here for you and send hugs to you both. Look after yourself.

Pam x

draytl2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Ellie 

I’m so very sorry to see your last post. Have you got support from the community nurses or hospice services in your area? 

I don’t know what to say as this must be a very difficult time but thinking of you both. And please keep updating here, there aren’t any rules about qualifying for a thread as far as I can see. 

Take care 

 

Lisa 

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Thanks Pam for the breathing tip.

Christine is now home and unfortunately no more treatment for her. She is now requiring a lot of care and me as a full-time carer. It breaks my heart it honestly does to see my love slowly disappear before my eyes. It's really a difficult time. 

I hope I havent brought anybody down in this message. I'm not sure I qualify for the plasma chat anymore but I wanted to reply and thank you for your support.

Take care

Ella

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Dear Jencat,

thanks so much for the info. I know we all have a different version of BC and we all respond differently to the drugs but it's good to hear positive feedback - every little bit helps when facing something new! I had a difficult time with Docetaxel some years ago, ending up in hospital with neutropenic sepsis so it has to be better than that! I'm told I will be given a Covid test when I have my pre chemo appointment next week - will have to see if that's going to be every time I go for bloods etc. Still no invite for the jab so all in the lap of the Gods as usual!

Hope you get some positive results from your scan - waiting for results and trying to second guess them is just the most unsettling thing. Fingers and everything else crossed for you. Do let us know.

Stay well and thanks again Pam x

 

Jencat
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Dear Pam,

Fingers crossed you're offered your vaccine really soon. I received a text last Thursday offering me the vaccine the next day at my doctors surgery! I didn't feel it and my arm felt fine! My arm did feel a bit sore the next day and in the evening I was really tired and fell asleep for a couple of hours and I felt cold, not shivery though. According to the leaflet these are are common side effects. I was ok by the next day and well enough to have my chemo yesterday. Ideally you should have the vaccine towards the end of your week off because your immunity is at it's highest, but when I spoke to my oncologist about it, she said just take it whenever it's offered!  I'm in Medway btw. 

Eribulin is an easy chemo to have, the infusion is only about ten minutes! It does take a longer than that because of obs beforehand (and in my hospitals case, sometimes a long wait to have the chemo!) I'm getting on well with Eribulin, the side effects are manageable. I had chemo yesterday and I feel ok today, just tired. Not helped by the steroids you're given before chemo, which isn't so bad if its in the morning, but I had my chemo at 4 yesterday. I feel tired when I get home and then can't get to sleep because the steroids have kicked in! I usually feel quite tired tomorrow as well and then pick up as the week goes on, ready to start again next Monday! It's two weeks on/one off. I feel well enough to do normal things.

I haven't been sick at all, they give you anti-sickness tablets to take home, but fortunately I've barely needed to take them! I wear the travel sickness bands whilst I'm having chemo and for a couple of days afterwards, so don't know if that's what makes any difference! I've had a bit of a sore mouth occasionally, but that seems to come and go and not really caused me any problems. In fact I'm eating really well on this chemo. I have found that my mouth can get dry, so probably drinking more.

I had a scan at the end of Nov after 3 cycles and that showed very good results, which was encouraging! (I had 4 sessions of radiotherapy before I started Eribulin, so I don't know if that made any difference to the good scan results) I've got another scan next week (I'll have had 6 cycles by then) so I'll find out how it's working after that! As you can imagine, I'm feeling a bit anxious about it!

My problem is not with Eribulin, but with the constant trips to the hospital. I've got a PICC line, so that's flushed weekly and with Eribulin being two weeks out of three, bloods taken, hospital for chemo and now I've been told that I've got to have a weekly Covid test! I did manage to negotiate yesterday that I could have the test on the same day as the line flush otherwise it was three hospital trips in a week!

Hope this info will be of use to you, Jencat x

 

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

dear jencat,

  thanks so much for your reply, very encouraging. Supply of vaccine in Kent seems a  bit random. My gp will do it but cant say when. I'm 74 so still group 4 but they will put me to the top of the list for the group in case its done alphabetically as I'm a V!

Can I please ask how you got on with eribulin? I have a portocath so dont mind infusions, just more hospital visits to ashford. Good job the virus infections are going down here. Cancer AND covid is very unkind! I hope you had no Ill effects from the jab and chemo combo.

Ella, I forgot to mention a breathing trick which has helped me and might help christine feel better. Normally when anxious,  I would try to breathe more slowly and deeply to calm me down, particularly breathing out. This is difficult with reduced lung function because of the fluid but pursing your lips as though ready to kiss someone(!) as you breathe out, allows you to breathe more deeply so you can get more oxygen - the following breath in will be deeper too and it will slow  breathing down so you don't feel so panicky. Not sure why it works but it does, though it makes me cough too!

Thank goodness for this forum and all the kind folk who are willing to offer support and share their experience. I couldn't have survived the last 4 years without you - thank you🤗

Stay safe everyone pam x x

 

Jencat
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Morning Pam,

Just wanted to give you some reassurance about Eribulin and the Covid vaccine. I have been on Eribulin since the end of Sept and had my vaccine last Friday. My oncologist was keen for me to have the vaccine and my chemo wasn't delayed because of it. (I had it again yesterday) Ideally it's best to have the vaccine before you start a new chemo cycle because your immunity is at its highest, but my oncologist didn't seem too worried about that, she was more anxious that I got the vaccine when it was offered.

I think I remember reading once that you're in Kent? So am I.

Best wishes, Jencat x

draytl2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Pam and Ella 

I still lurk on this thread and I’m sorry to see you have both had difficult times recently. 
Ella I hope that they manage to get Christine feeling comfortable so she can build up her strength- I can’t imagine how hard it must be. 
Pam- I hope the chemo goes well. I feel frustration that so many people may not have COVID but their lives are being so affected by the carnage that it wreaks. I really hope you get that jab soon. It must create a whole new level of anxiety trying to fit that in with treatment plans.

Rita had a scan in December which she was anxious about as I think she felt like there may be a change but the scan showed stability (touch wood) so she continues on the trial. 

Lots of best wishes to you both 

 

Lisa 

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Dear Ella,

So sorry to hear what a difficult time you both have had - not the new year you wanted. I know how hard it is for our partners to deal with our situation, especially when we're so poorly and away from home. Sending a big virtual hug to help keep you going. 😊

Am guessing the trial drugs have been stopped. I'd be interested to know if Christine had the lung fluid problem before the trial. It has only been evident with me since I stopped the trial drugs in Dec, though so far, it only makes me a bit breathless. Still, I have found it difficult as this is the first real symptom affecting me day to day, which I feel is due to my cancer. All the other aches and pains I put down to my age and existing conditions - perhaps a bit of denial there but it's a short sharp shock to recognise where I'm up to.

I also have days when I don't want to eat much. We have a great juicer and I make fruit and veg juice with a carrot, an apple, a pear, an orange, spinach and a big lump of fresh ginger. Very light and easy to digest, tasty - the fruit gives a little sweetness but full of vits, fibre and good stuff. Helps to keep me going.

I have had big problems with stress - IBS, mostly down to stress, started when caring for my parents 10 yrs ago . Not sure how you feel about complimentary therapies but I have found them very helpful. I have had aromatherapy massage for years - sadly not at the moment becos of the virus and use essential oils in burners and in the bath for de-stressing, aches and pains and to help with breathing. I can recommend some oils if you're interested. I have also had Reiki which some cancer centres and hospices offer for free - relaxing, soothing and for me, healing too. I would certainly recommend it. I also use tapes by an american surgeon called Dr Bernie Siegal who cares for cancer patients - the tapes use a mixture of guided imagery, meditation and self hypnosis. Never fails to relax me or send me to sleep if it's 3am! His books and CD's are on Amazon.

But of course, the best remedy is being able to talk to someone who understands, like the folk on this forum. Please do stay in touch and let us know how things are. I hope you have better news soon and that Christine is able to be home and receiving some helpful treatment.

Stay safe and well. Pam x x

ps still waiting for my covid jab but due to start Eribulin in 10 days!!! Who knows what's best?

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Pam and others on this thread,

What a bleak January it has been. I've really appreciated the snow and the warmth and comfort of my home.

How is everybody doing?

Christine after a 17-day in hospital came out for 5 days only to go back in last Tuesday. Now its Sunday and shes still in hospital. So very tough and an absolute test of my resilience. 

Her fluid was drained and then she had sterile talc to make sure more fluid doesnt build up. Shes also been struggling to eat, sickness and anxiety. Her body has taken a lot.

Now she has a chest infection and oral thrush, plus a little more fluid. Shes been very poorly but not eating has not helped. Fortunately she has a lovely room in a lovely ward and is being well looked after to get her stronger and eating again. Palliative care are fab and she will see a dietician.

So it's a case of seeing what's next when she hopefully gets out next week. Discussions with oncology for treatments and seeing how palliative care can support. Shes due to have her Covid jab so probably need to get that and get stronger before treatment. 

I have to say Pam, you seem to be keeping a sense of humour and that's what we need.

I hope you are all ok. We may not have control over certain things but we can tackle it with humour, love and dignity.

Ella

 

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi,

Please see my reply to Ella which gives you some idea of the progress of my TNBC. Mine was IDC - ductal so different to your mums. I hope she has found some treatment that works for her - this is such a difficult journey, we need all the support and info we can get.

Stay safe and all the best to you and your mum. Pam x

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Ella,

Sorry to hear Christine has had to come off the trial . I must admit I always wondered whether us TNBC's were added to the trial as an afterthought, given that we started the drugs BEFORE our gene test results came back. Maybe they thought it worth a try.....

I am going back to chemo. Eribulin was due to start today but now pushed back till the beginning of Feb, in the hope that I get a covid jab before I start. I have been shielding since Feb due to mets in my lungs making it unlikely I would survive infection by Covid.  I live in Kent where infection rates are high so visits to hospital for infusions are not the best idea. Will speak to my GP about the jab - just hoping it's not alphabetical as I'm a V!! Chemo can lower immunity too so having the jab once I'd started wouldn't be the best either - a bit of a rock and a hard place!

Other options open to me include Carboplatin alone or with Gemcitabone, Paclitaxel (infusions) or oral Vinorelbine or Capecetabine - so still plenty of options - just need to find the one that works. My original biopsies were IDC, ER/PR-,HER2 + and ER/PR-. HER2- 2 different phenotypes!! so started with Pertuzumab, Trastuzumab and Docetaxel x 6, then Mx with full axillary clearance, 15 sessions of radiotherapy. Had 1 course of Capecetabine but had bad side effects - maybe gene related.

Lung biopsy last Jan confirmed now triple negative with mets in lungs, bones and liver. So not giving in just yet, though I have to admit a bit stressed with cancer, covid and christmas disappointments and waiting for a Ct scan result but still here to complain. Hope you find the right treatment - we are all so different in how we respond. Thank goodness for the support from this forum - nobody else quite understands what it's like to live with this disease.

Hope it all goes to plan for you. Love and hugs Pam x

Secondarysister2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Pam,

I saw in one of your earlier comments on this thread that your cancer is relatively slow growing. Could I please ask what type this is ? Is it lobular ? My mum has lobular and I’ve heard it is slower growing.. 

Thank you. All the very best for your treatment xxx

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Pam

Hoping you are ok.

Christine is following a similar path to you. She too has some progression. Her liver lesion has grown and a new lesion has appeared in her chest. So she is off the trial

I wondered what treatments you had available to you.

How are you doing?

Ella

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

 
EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Pam,

I'm sorry to hear you aren't able to carry on with the trial. We did hear not long ago that it's the case if you no longer respond. We have a scan this week so fingers crossed things are ok.

I get how gutting this must feel. I know that already the number of treatments available to Christine has increased since her diagnosis in March so I'm hoping this is the same for you too. 

Thanks for updating us all. I hope you hear about your next steps quickly and that you are keeping well for a peaceful and safe Christmas season.

 

Ella

 

 

 

draytl2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Pam 

I’m sorry about your progression which has resulted in being taken off the trial. I hope you hear about the next steps quickly, the waiting must be very hard. Take care and thank you for updating. 
Lisa 

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi, hope you are making good progress with your trial and continue to feel ok.

I have had to stop the trial as after starting the 5th cycle, MRI shows progression in my liver mets though those in my lungs and bones were more stable. (Any progression automatically excludes further trial participation). Who knows??? Really gutted as I feel pretty well and this will be the 4th Christmas in a row when I've had bad news or surgery to look forward to in the new year. This wonderful disease just keeps on giving! So back to my local oncologist to see what she has to offer if anything. 

Hope you are all able to see some loved ones this Christmas, find some peace at the end of this awful year and have something positive to look forward to in the new year. Love and hugs Pam x

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi there!

Great news. Makes a change really.

Christine got her first scan results and all tumours are shrinking. The one in her liver is half the size it was. It was small in the first place but we really thought we weren't going to get this news.

It makes the off days worth it.

She's also going to get some bone strengthening medication.

I hope today finds you all well!

 

Ella

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi!

Thanks for your update. So that's good stable news. We will get results this week.

Christine's foot pain does get a little better after walking thanks for the advice.

Shes also trying taking AZD at night instead of the morning which means she naturally sleeps through the worst and is better during the day.

Take care!

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi, keeping everything crosssed for some good scan results for you. My last scans after 2 cycles came back "stable disease, lungs largely unchanged, some changes in bones, possibly healing and changes in liver too" though that needs another MRI as not so clear on CT. Stable in this context means +/- 20%. Next CT and MRI not till end Nov unless there are problems in the meantime. The main SE for me has been nausea and tiredness in the 1st week of the cycle when on both drugs. All my blood tests have been within the normal ranges though white cells a bit on the low side. But I think these drugs can alter your whole body chemistry as I have had to change my diabetes meds to stabilse my blood sugar. I have also had mood swings but given the restrictions on our normal lives due to the virus, I've put that down to only being able to talk to the post and bin men and missing seeing the rest of the family for a hug.

Haven't had any foot problems. It may be some kind of cramp or spasm. Does it get any better after walking? You could try rolling a tennis ball or similar around on the floor with your foot which might help the circulation. I sometimes get calf cramp in the middle of the night and have to thump my leg and hop around the bedroom but I think that's due to not enough exercise!

Compared to regular chemo, these drugs are bearable and lets hope they have a positive effect for most of us. I can continue with the drugs until there's some progression so will be into my 4th cycle next week. Really hoping for good news for you too. Go well.

Pam x

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

I forgot to ask. Has anybody had foot pain, particularly the ball of the foot?

Thanks,

Ella

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi!

Thanks for the update. That's great news about your step-mum. We should always celebrate the wins.

Christine is due to have her first scan next Wednesday. It's be great to see either no change or some improvement. Let's see.

She's felt quite low since being on the trial and had occasional days where she's just been so upset. It's very out if character for her. But we've tried to turn the corner. She's trying to get out more rather than sleeping/staying in bed and is starting some counselling sessions with Maggie's. I've also joined a Maggie's friends and family group which seems to be just the ticket.

Take care everybody!

Ella

 

draytl2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi ladies 

I posted earlier in the year about my stepmum who is on the trial. She has her last scan about 5-6 weeks ago and things continue to look positive. Her tumour site feels much softer and she is continuing to manage the treatment well. She has just been on a long overdue trip away in their caravan which is good timing given the second wave that appears to be looming. 
Wishing you all well with your next scans 😊

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Pam,

Thanks for the lovely message. Good to feel as if we are in company if you know what I mean.

Christine is the same. She has liver and lung mets but so tiny. It seems the AZD week might knock her out the most. Let me know about your scan after 2nd cycle. Fingers crossed eh?

 

Ella

 

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi ella and christine,

I am starting  my  second cycle today and so far, there have been few side effects. I have felt nauseated,  though not actually sick and some headaches - more so in the first week of the cycle when on both drugs but  not continuously. I have metoclopramide for sickness if it gets too much. I take mine at 8am and 8pm so I can eat breakfast at 9am and finish my supper by 6pm, and have a snack after 9pm . This seems to help me with the nausea  but as I'm retired , I have the luxury of time! I miss my cup of tea first thing though! I have also felt a bit weary at times but suspect I would feel better if I did more exercise. My classes have stopped becos of the virus but i should really be making more effort. 2 other ladies in Kent are also going well re se's, so it seems to be tolerated  well, though of course everyone  is different 

All the monitoring was probably the worst for me, as I'm needle phobic(!) but my bloods seem to have stayed within normal range, though with some fluctuations.  I have asked for copies of all test and scan results so I can monitor changes myself. I also have to travel 20 miles to the oncology unit running the trial so not my usual oncologist though I can get my bloods done at my local hospital. Dodging the dreaded virus is my main concern now so still mostly in isolation.

Compared to chemo which I had 3 years ago, which gave me 5 days in hospital  with neutropenic sepsis,  the trial drugs are ok. Wont have another scan till end of 2nd cycle, so must wait till then to find out if it's working🙄. I am lucky as although I have tnbc with mets in lungs, bones and liver, mine are fairly slow growing so far, so hopefully 2 months on the trial won't be a disaster if it doesn't work,

Hope your partner is doing ok. I have heard good reports of this trial with shrinkage  etc of tnbc so fingers crossed for us all🙂. Thinking of you and sending lots of positive energy. Stay well. 

Pam x

EllaRobb
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi there!

My partner Christine started the trial yesterday. It would be great to share progress/tips. She has TNBC.

Today she's feeling quite tired but so far so good.

Thanks!

Ella

draytl2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

I think the only low blood count she has had so far is slightly low iron. They’re not doing anything about that yet, just keeping a close eye. All other blood results have been fine. She feels very well on the drugs too, she managed well with the chemo but says this has less side effects. 
Good luck to you with your treatment x

Newgrandma
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Thanks so  much for the encouraging replies. It seems I'm  eligible and am hoping to start In  a few weeks. I've asked for a delay so I can get to see my new grandson, now 3 months old. Once I start, theres a good chance the drugs will knock my immunity so I'll be in strict isolation and unable to see my grandchildren. I was told again that if I got covid, I wouldn't get much treatment as I wouldn't be expected to survive becos of my age and lung condition! Perhaps if they knew me  better, they'd give me a chance - I dont give up that easily🤨

So I need to avoid the virus.  Can I ask please if your step mum had any side effects, particularly low blood count? I know everyones different  but it helps to be prepared. Thanks again - and thank goodness for the sunshine - not sure how I'd cope without it. 

stay safe  pam x

 

draytl2
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi newgrandma

My step mum is on the olaparib and AZD6738 trial. She started this before COVID and has remained well throughout. She has her bloods checked and the meds arrive by courier. So far she has had a good response- tumour not able to be felt and shows a decrease in size on scan and lung met has disappeared. Good luck with what you decide to do 😊

Mexico
Member

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hi Newgrandma

 

im also mTNBC and have looked at this trial, Plasma Match.  If it were me I’d go for it.  I went for radiotherapy every day to a London hospital for radiotherapy at the height of the coronavirus situation and I was fine....kept very safe.  It’s about risk v benefit.

mexico

ZoeK_BCN
Community Manager

Re: TNBC - anyone on Plasma Match trial or on Olaparib

Hello Newgrandma,

Thank you for your post.

I am sorry you haven't had a response yet. I am hoping my message will help our members to find your post and share their advice and experience.

For clinical questions, please do not hesitate to contact our Nurses or post your question on to Ask Our Nurses board.

Sending you our warmest wishes,

Zoe

Newgrandma
Member

TNBC - anyone on Plasma Match trial or on Olaparib

 

Is anyone with TNBC on the Plasma Match trial? This would be Group E for treatment with Olaparib and AZD6738. I have lung mets which have shown progression on last couple of scans and my onc has suggested the trial. I have been treatment free for 18 months as I don't really have symptoms from mets.I seem to have a non agressive TNBC - lucky me!! I am in Kent so would go to Maidstone Kent Oncology Centre.

Anyone had any experience with Olaparib? I need to decide whether I can cope with reduced immunity from the drugs with the dreaded virus still around, particularly as the monitoring for the trial involves lots of blood tests, ct's etc so plenty of hospital visits.

Look forward to hearing your thoughts/ eperience of this.

Thanks, stay safe and well. Pam x