Morning lovely ladies. I had my appointment with my oncologist yesterday and she went through my scan with me. Basically the segment 5 liver metastasis has grown from 18mm to 28mm since August 21st and the nodule at the tip of the liver has grown from 9mm to 17mm. The paracolic deposits are largely unchanged. Not good news but relieved that my breathlessness is likely to be caused by stress and not lung involvement. They want me to try gemcitabine and carboplatin. I was surprised because I assumed that I was carbo resistant since I had recurred within 5 months. They think it's worth a shot. They have also suggested I take letrozole when I start to feel stronger. The Chemo and Niraparib have really taken their toll on me this year.
Has anyone had any experience of either of these drugs? What can I expect?
I have asked to delay chemo until after Christmas. I can't face it at the moment. They are going to see me in 3 weeks to monitor me and I will keep my fingers crossed that I can have a chemo free Christmas.
I feel wiped out and so anxious. I wish I hadn't had the Niraparib now but hindsight is a wonderful tool. I just feel that options are running out and I don't want the next treatment to make me feel worse and not work either.
Sorry for being so miserable but my big girl's knickers are at half mast ATM. What a sight!!!
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Welshandproud
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I am so sorry that the Niraparib hasn't worked for you. Your team will come up with a new plan for the new year, in the meantime enjoy the Christmas break with your family and friends, you might even get some new "Big girls knickers" in your stocking! xx
Dear Welshandproud. I'm sure you're well and truly gutted at your news. My husband said the other day he doesn't know why we attend our appts. as I always come away feeling disheartened and low. I then spend the day wallowing in pity, have a good cry at the s.... time we're having and sulk for a while. Then I try and be positive and read about all the potential treatments still out there and plod on. None of us know what the future has in store whether we have a cancer diagnosis or not and there is such a lot of treatment now available to us. So as you say, pull your big knickers up and make some tentative plans for the future. You've done brilliantly so far and will weather the storm again. You Welsh are a tough bunch (that's coming from a Northerner!) and you can do this!! Good luck, sticky3006 xx
Thank you so much sticky. You have expressed exactly how I felt yesterday after my appointment. Your husband is right. I wonder sometimes too. I did consider pretending yesterday that I had forgotten about my appointment and staying on the sofa with my dog and a book and a cup of tea instead.
Yes my knickers need a good hoist and hopefully more positive emotions will come soon.
Bugger - sorry to read this - hopefully you can stave off the next chemo until after Christmas to give your body a bit of recuperation time - everything crossed for you - I lose track of who is doing what where but are there any trials available to you ? X
Agree with birdsong have treatment ASAP I had this combo and it was pretty easy no hair loss and no side effects 🤗. My problems began when started Niraparib made mine More aggressive and spread( was clear until then with Ca125 of 3. After being on this maintenance drug for 3 months scan shows multiple areas now in abdomen and ca125 went from 11 to 51 in 2 weeks 😪 So today I was started on chemo again 3 rd in the last 18 months (. Doxil and avastin together one week then 2 weeks later just Avastin and so on for 6 cycles). So buckle up and good luck hugs and ably good thought 🙏🏻 Sue
Thanks Sue. It's interesting to see how many women have found Niraparib to be unhelpful. You really were so unlucky that it appears to have made yours spread more quickly. Wishing you all the very best for the new treatment. Sian xxxx
What l can say is that l had this combination earlier this year and found it very doable, much easier than carbo/taxol. I also had no hair loss!
I fully understand why you want to delay until after christmas but would encourage you to rethink. I am a believer in treating asap, l personally would be worried about what was happening inside me and l feel attack is the best form of defence.
In the meantime pull up those "old pants" and do nice things for yourself in these 3 weeks till your next appointment. Good luck, stay strong and lets get a smile back on your beautiful face.
Just took a look in my folder. I had 12 trips to chemo suite and l was lucky enough to have both carbo & gem infusions on each trip, one after the other, also managed to never miss a week, so l was there for about 4 hours each trip. It was three weeks on and one week free (lovely week).
I had two issue towards the end 1) was finding veins in my hand and 2) was a bit or a reaction to the carbo, so just required more antihistamine . Think l would consider a port anytime in the future. Hope this information is of help and helps settle your anxiety.
I am so sorry about your news and the prospect of more chemo. Have you asked about the new high tech radiation surgery for your liver? I don’t know much about it but think they have it at the Marsden. I hope you get some fancy new big girl knickers soon! Xo
I hadn't heard of that but I'm certainly going to Google it now. Yes I think a big girl's knickers shop is in order!!! Thank you for your good wishes xxxx
You are bound to feel deflated by this news Welshandproud but those big knickers won’t be at half mast for long...I am sure. Sounds like your team are determined, so let them carry you forward. You will bounce back but for now sending a big virtual hug 🤗 xx
I had Cisplatin and Gemcitabine and didn't really experience any problems until near the end of treatment, so if your team do want to start before Christmas you may not feel the worse for wear and be able to celebrate as normal.
Overall, my hair thinned but didn't fall out, I've not had Letrozole.
Thanks January. Good news about the lack of hair loss. That sounds promising. So pleased that you didn't suffer any problems at the start. It makes me feel less fearful about the chemo. Thank you xxx
I am really sorry to hear that, how disappointing.
I am on letrozole and its a bit of a pain in that joints can ache if you stay still for long but it goes when you move about. And because it is a hormone blocker my hot flushes are back ( but they are quite welcome at present)! It can shrink tumours significantly as it stops them feeding on oestrogen.
I also take fenbendozole ( google Joe Tippens protcolto - mycancerrocks and How To Starve Cancer by Jane McLelland).
My onc and GP are prescribing what they can from these within the confines of the NHS and NICE - low dose aspirin, metformin and simvastatin. These all block the feeding pathways from cancer stem cells which chemo doesn't touch. I won't list all I'm taking as I'd run out of screen, but my onc agrees with the science. Various supplemements help them work so these myself.
If you have Low Grade Serous Carcinoma you might want to ask about Trametinib which is pipeline after Prof Gourley got good results with it in increasing the time between recurrences.
My husband was diagnosed with Bowel Cancer on Sunday so we are going through it all again and waiting for surgery plans and dates. But he is also starting these protocols.
Argh not your husband too, Alex. Sending you luck and strength, to get through the initial tough steps and hopefully land on a curative treatment plan. xx. Maus
I'm so sorry to hear about your husband Alex. That is so incredibly unfair when you have been through so much already.
Thank you so much for the advice about the Letrozole. I am concerned about the joint problems as I have had issues since taxol and avastin but this Letrozole does sound promising. I will look at the links you have suggested. I have PPC high grade serous.
Thank you for all of your suggestions. Sending lots of love xxxx
I only just saw your post, I finished that chemo August, I was given carbo gem first wke than just gem the second week it was one of the quicker ones, it wasn't too bad. You also keep your hair.
I’m so sorry to hear that, I haven’t had experience with those meds but wanted to send my best wishes and hope that you will feel stronger after a short break and ready to tackle the new treatment. Our paths seem to be similar. Remember there are still other treatment options available so hang in there. Dee xx
Thank you so much Dee. It is really helpful to know that someone else is in a similar situation. I don't want others to be suffering too but somehow knowing that you are not alone in this cancer world makes it easier to bear. Sending you lots of love xxxx
Damn, blast and much worse expletives!! I'm gutted for you. I had that combo and got a good remission periods (over 3 years) although I didn't get to NED. Day 8 got knocked on the head halfway through.
Get them there knickers hauled up. You can do this! Enjoy recharging the batteries.
Thanks Sandra yes I must admit my language was also quite choice when I found out. Did you have the carbo/gem or the Niraparib? You certainly got a good period of remission on it.
Thank you for your encouraging words. I am yanking up my knickers as I type!!!! Sending you lots of love xxxx
I'm 3C HGSE, somatic BRCA1 and HRD+. Have had 2 recurrences in 4 years. Started Olaparib this week. Had carbo/gem for 2nd recurrence. By far the easiest line yet. Hair, eyebrows and lashes thinned, but kept most of it. Two weeks on one week off. Had complete response. Fewer side effects than all the others combined. Have had carbo, cisplatin, taxol, caelyx, gemcitabine. You'll be pleasantly surprised at how much easier gemcitabine is compared to what you've already had.
Thank you so much Tesla. That sounds really promising. I really struggled on avastin and Caelyx. Perhaps this will be the one that really makes a difference. I am pleased that you found it so bearable. Thank you xxxd
Sorry to hear your news. I haven't had gemcitabine but have been taking Letrozole since April 2018. I'm finding it quite easy, some tiredness, a few joint pains, tho I'm not convinced that's all due to the Letrozole as I also have arthritis. Had a few mild hot flushes at first but they soon disappeared. Di
Thank you Di. I'm sorry that you have had joint pain but sometimes it's difficult to tell what is an ongoing side effect or an existing condition. I'm not certain whether I would have had arthritic problems anyway even if I hadn't got the cancer. I hope they have given you something to help with the arthritic pain xxxx
So sorry that you have to deal with this b....... again. I’ve just had my final cisplatin/gem main infusion with a gem top up to follow next week and like others have said, it has been mostly doable with the bonus of not losing my hair yet again. The midway scan showed the combination was having a positive effect.
I know how you feel about Christmas. I tried to delay the start too as I was pretty battered by three months of caelyx (didn’t suit me and wasn’t working so they stopped it) but oncologist pushed me to get on with it and now I’m glad I did. If you get the timing right, Christmas could be during the third week of the cycle when you can feel fine.
Whatever you decide, good luck with this treatment. Sending love Jo 🌺🌼🌸🌻🌹
This disease is crap, unfair and indiscriminate. You are brave, we are brave, the oncologists are doing their very best, all we can do is is keep up our courage and determination and make the best of things. KBO.
I had this combo last year, as second line and it was ok. The only issues I had was with the Gemcitabine, as it is hard on your bloods. Had to have a few transfusions, and my hair thinned a little. It was however effective at knocking the b.....r back, although 12 months later I am back on the gravy train. I also have spots on my liver now. The programme they followed with me was one week gem and carbo, the second week gem by itself. Then a week off. However, the infusions themselves did not take long. Not allowing for all of the faffing around before and when they switch the drugs. 1.5 hours for the combo, and the following week, only 30 mins for gem by itself. Give it a go, you will find it is very doable, rather than letting things get away from you. Best of luck, Therese
Thank you so much Therese. That certainly sound s doable though the thought of blood transfusions does sound scary. I'm so glad it was effective at knocking back the cancer. I hope it works for me too xxxx
I had Carbo/Gem and found it quite doable the only issue I had was with low blood count and had to have two blood transfusions. Apart from the extra visits to the hospital and the time involved it wasn’t really a problem
So sorry to read this. I am on a phase one trial and my liver lesions have reduced significantly so it is well worth looking into trials . I am on the Patriot trial but doctors don’t yet know why it has been working for me- the trial is for solid tumours in general and I have clear cell. Fingers crossed that the next treatment works and that you don’t have to have it over Christmas.
Thank you Neona. The patriot trial certainly sounds interesting. Where are you having that? I'm so glad it's working for you. I know that I'm starting to run out of options locally so that night be something to bear in mind for the future xx
I travel to the UCLH Research Facility in Tottenham Court Road every fortnight from Cornwall. I had recurred by the end of frontline chemo so options were very limited in Cornwall.
Do you do find that ok? If you have any problems do you have to go up to London or can you go to your local hospital? What about things like blood tests? Sorry so many questions. I hope you are keeping well xxxx
You have gotten great input above and I was happy to read so many did well on Gentimicine and you may find it completely tolerable, which will make it less hard to go through chemo again. I am hoping you can go without treatment through Christmas and its so good they are monitoring knowing that is your goal. Wishing you NO more growth before your next check up and that you get your wish. oxoxo Judy
Thank you so much Judy. I'm pleased to it was bearable for you too. I'm keeping everything crossed that I am going to be ok at my next appointment and that I can enjoy Christmas before I have to go back to the land of toxic cocktails xxx
Hi Sian. I am so very sorry to hear this. You have tried so hard but it sounds as though you have a great team and they will offer you a good plan. Be kind to yourself and go gently. We have been travelling a similar road all year so I do understand the anxiety now. Sending love and a big gentle hug. Carolyn xx 🌸
Thank you Carolyn. Yes we are certainly on the same journey and I really appreciate your support. My team is great and I really believe in them but this anxiety just takes over. You know how it is. Sending big hugs to you too xxxx
Hello there. Just a quickie as I haven't had your suggested treatment so can't really comment on It. I'm so sorry that you've had this news. It's very frightening and I really feel for you. I hope you feel a little better today.
I can comment on the Letrozole, though. I had it a couple of years back but didn't find it easy and eventually decided to stop it. I do wish now though that I'd persevered. However, my Ca125 started to rise (It's always been low) so I'm now on Tamoxifen and it's not made me feel too bad and thankfully - my blood level is steadily falling. It's not a miracle thing as I do have some of tumours growing a little, for which I am about to have some Radiotherapy. I really had no faith in the Tamoxifen and declined it to begin with but later decided it was a bit rude not to take my Onco's advice. I'm so glad I did.
Wishing you well with your treatment. Don't forget to get some frilly big girls' fighting nickers. The frills will help you feel a bit better about them.
I hadn't thought of getting frilly ones but now that you have suggested it!!!! The frills might make them easier to pull up. Off to emporium of huge knickers in the morning to see what I can find in teal with frills on.
I'm sorry that Letrozole did not work for you but glad that Tamoxifen has been more successful.. Sending you a big hug xxxx
I am so very sorry the bugger is back. It’s such a rotten time for you right now but I think once you’ve had a little time to assimilate the news, take on board all the information and weigh up all the options it would possibly be a good idea to have a further chat with your oncologist to properly discuss the plans and best options going forward so those big girls britches can be hoisted right back up and ready for business.
As always, we are here for you to support you in any way we possibly can and I send much love and big hugs lovely Lady ❤️Xx Jane
Oh thank you so much Jane. I've come down to Swansea to stay with my daughter for a few days, which has been lovely. I've been out in the Autumn sunshine with my daughter and my dog and we've had lots of nice coffees and cakes. I think that I am slowly getting used to the idea that I need more treatment and have got a bit more perspective.
I really appreciate your kind words. Thank you xxxxx
I have same problem and started on the same regime as you five days ago which for me consists of treatments on day one and eight then two weeks off. So far ok but will post again as I go on. Good luck Anne.X
Had first treatment last Thursday life quite normal at the moment .Second treatment tomorrow . Had kidney function test yesterday which took up most of the day. Don’t we have fun . Any way I can help let me know I have had most chemos going but am still here.As I am 73 I would probably be slowing up anyway but blame everything on you know what. Keep smiling. Love Anne.
Oh poor you. Our idea of fun days out tend to change when we have Chemo lol. Thank you for your words of encouragement. I send you lots of love and a big virtual hug xxxx
Hi huni! Was given the same news on Friday but with thicking around sigmoid colon and wall. Niraparib did nothing but sent my ca125 up to 700 ! Was 100 after finishing cisplatin! So sending scan to another surgeon as I want if removed and then maybe more chemo if needed! Still options & lots of trials out there, stay strong Hun keep fighting 🍷having a brandy
Just back from America! Feeling well apart from the alien! Sending hugs xxxx
So glad you had an amazing holiday before the news that the alien has landed again. Niraparib seems to either work really well or quite negatively for us. What will they be removing in surgery? I've just been offered chemo and hadn't really thought about surgery. Perhaps I should talk to my team.
Wishing you all the very best for the next stage of treatment. Let us know what the surgeon says. Sending a big virtual hug xxxxx
Hi my lovely, I haven’t read all the posts above but read this one. I’m so sorry things didn’t work out in one direction for you a s you’ve had such a tough time with side effects.
Have you had a second opinion? When mine came back in my liver, only a second opinion in London told me that surgery was by far the best option. And gives you the best chances. Have you spoken to anyone in London at all? It could give you some real hope and I’m evidence that so far I’m still here (2 years on)...so please keep looking and keep asking questions. Gentle hugs. Nicky XX
Thank you Nicky. Which hospital have you visited in London? I've an appointment next week. I have considered asking about a second opinion. I'm so pleased that it has been so successful for you xx
Sorry Nicky. No I meant that I've got an appointment in Cheltenham next week. I used to live near Charlotte's when I first moved to London in the 1980s. I'll be back in touch when I've spoken to my team xxx
I am sorry to hear about your struggles. I feel like it's a roller coaster. You sound strong and balanced in your writing, so that's good. I had been on carbo gemzar for a year and a half, every other week, mostly with Avastin. I just got off 2 months ago.
For my experience, I had some hair thinning eventually, maybe after a year, but it was okay. I didn't find the chemo debilitating. I am not sure if I had side effects. I had some mysteries. I felt a bit of very mild shortness of breath. It scared me at first. I was examined thoroughly by lots of docs, and no one found a cause. It's very mild, more like I need to yawn. Also my joints started to hurt after a year but my doctors were all pointing to other causes. In fact I worked on the arthritis really hard with every supplement and exercise and it seems to be much better... hardly a problem. Anyway, maybe it wasn't related.
Generally I think this chemo can be pretty easy. My doc kept me on for a year even though I was in remission almost the whole time. I just got off a couple of months ago, so I am waiting to see. I find this a scary time. I try to minimize expectations to protect myself emotionally. But I know one needs to also find a balance with hope and confidence. I think there are some contradictions I need to live with.
Meanwhile I spend lots of time on healing. It seems like mental strength is a good thing to try to develop, especially if one is good at that. Again, from your tone, I get the feeling you are! I just try to think of all the ways I am fortunate and the beautiful things in life I can enjoy. Gratitude. It seems to work.
Wishing you love and strength! Please feel free to ask me any questions about the effect of this chemo.
Thank you so much for your kind words caroleigh. I think you are so right about mental strength. I try to keep myself happy doing things i enjoy doing, spending time with people I love, not doing things that cause me pain and making the most of every day. That is why I feel so gutted about the Niraparib. I felt so well after my holiday in Turkey in September. I felt amazing and had to start Niraparib as soon as I came back. I felt awful, found it difficult to do much without being exhausted and then it didn't even work. I feel cheated of the last couple of months!
I'm sorry that you had the breathing problems on the carbo gem but am pleased that it kept you in remission. I hope that it can dobthe same for me too
Hi Sian Just seen your post. Sorry to hear your news. Have your not had Carboplatin before? Unless your Onc says otherwise it may do you good to have a break until after Christmas to build up your defences and attack the cancer with all guns blazing. Big Hug, thinking of you xx oh and PS your not miserable, you are dealing with a lot! xx Kathy xx
Thank you Kathy. Yes I've had carboplatin twice before and only finished the last lot at the end of June. I might be carbo resistant but they want to give it a chance to see if it might work.
Yes I'm really hoping that I can enjoy a chemo free Christmas and then start in January
Thank you for your kind words. Sending you a big virtual hug xxxx
Well.. I know what you'll get for Christmas.. suspenders! But joking aside, I feel for you and know how disappointed you must have felt after the news. Hopefully though, the treatment will work and beat it back again.
No specific tips for this regimen from me as I haven't had it myself.. only not to lose hope, and that you keep trying / retrying / combining treatments until they work. Hugs, Maus
Thank you Maus. Yes suspenders are a good call. I'll add them to my Christmas list. With the size of big girl's knickers I'll need then perhaps luggage straps might be more appropriate!!!
Yes I'm pinning my hopes on this treatment being the one to give me some longer period of remission.
Sounds like we are reading the same scan! I agree the niraparib was easy but definitely made more spread and high ca125 go up fast ! I’m waiting for surgeon to read scan and go from there ! It’s on the surface of liver and seeding in peritoneum & surface wall of sigmoid colon that said I believe well it’s not invaded my organs no lymph nodes involvement and no ascitties! Do that being the good news! Like you thinking 🙏 we can do this after Xmas but now waiting for that call ! I do fill very positive or am I being naive! Still ladies out there doing well like to know how many are at this stage and are doing! Hold hands girl we can do this ! What we do know is chemo will kick it’s arse again at worse! Sending bigs hugs & strength 😘😘😘
Jools....you sound very strong and you can do this. I was dx’d Very similarly to you and I was given no hope at all locally ( in Devon). I went to London to Imperial and they changed my life ( for now at least), removed all seeds from liver and the spread, and 2.5 years after surgery, I’m still going strong. I still worry every single day, but please do look at London Imperial and don’t give up hope. There really are options for you xxx Nicky
Hi Nicky! Just left professor Fotopoulou! Hammersmith! Know to surgery! Chemo to treat disease again! But no surgery yet as not viable 🙄 disappointing!
Disappointed! Think possibly caylex next👍🏻 Just waiting for start date! But I have aired my views about niraparib as I am absolutely sure it caused the spread etc for me!
We all react & respond differently to these drugs! As long as I have choices that’s good! Didn’t feel like that yesterday 😡 but picked myself up and off I go 😘😘
Hi So sorry to hear your news, I'm sure your team will have some plans for your treatment. Like you the beast is back for me as well. I had bowel obstruction which resulted for me to have surgery and they removed 3 feet of my small intestine. I started my chemo combo of Carbo/taxol last Friday and so far with minimal side effects.
I have great Faith in our Dear Lord Jesus Christ, I surrender everything to him. 🙏🙏🙏
Will include you and all our teal sisters in my daily prayers.
Your doing great👍🏻What were the signs of obstruction? Been told to prepare! And how great you didn’t need to have a stoma! Which they tell me I might have later! You was your surgeon & where? Great news big hugs xx
Morning Hun, do you all any other ladies at our stage have much pain ? I’m getting pain throbbing below sometimes and tummy sides etc! If so what do you take! Also sharp intermittent pains 😡 thanks xxx
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Niraparib and peripheral neuropathy
Obstruction / blocked bowel - no surgery. Any advice - PLEASE 
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