Disheartened re treatment plan...2nd bout of chemo post-surgery

Ladies, I saw the Oncologist yesterday, following my debulking surgery 9 Jan, to discuss next steps & restart my second cycle of chemo.

She was very good, & answered all our questions frankly. I think I'm actually incredibly lucky, I do know that, the surgeon felt confident he'd got all the visible cancer during op. Oncologist said compared to others I was doing very well post-surgery. My CA125 was down to 100 pre-surgery, & she retested yesterday, albeit we're still awaiting those results. All good right?

Except...when discussing the optimal treatment plan she casually drops in that after a further 3 cycles of chemo (making 6 in total) I'll continue to have Avastin every 3 weeks till I've had a total of 14 I think she said. I questioned how this was administered & she said intravenously.

I nodded & said 'oh' but it was like a ticking time bomb. Off we went to chemo, saying we'd see her in 3 weeks. It didn't help that the chemo nurse I was assigned I'd not seen before & let me tell you, she bloody hurt me when putting the cannula in my port. I literally cried out and she brushed it off saying it was because I did not used the anaesthetic cream. Scuse my French but Bollocks! I've had that many people use the port now, you can tell who's good at it & who's not. I'm phoning the unit on Monday to say I don't want her again cos when she took it out she just yanked it (which hurt again) & said 'oh I like to do it quickly!!' Sorry...I digress

As I sat there, with time to kill, all I could think was I wouldn't be 'free' by the end of March which had been my goal. I got my diary out & worked out I'd still have to go every 3 weeks until prob Jan 2018 - a whole other YEAR. As I sat there the tears plopped down my face, as they are now while I'm writing this.

It's the fact I just wasn't expecting it. I had visions of being free, of putting this behind me, of carefree holidays, & a whole new normal. I know I'll always have cancer in my life as I'm stage 4 but this felt like yet another blow.

Sorry, Long post huh...I'm a rambler, I don't really do 'concise' or short & sweet straight to the point I need to give myself time, to absorb this latest news accept that I'm really very lucky as I know some ladies are fighting to get Avastin, I do know that (makes me feel guilty that I've reacted like this, & selfish for thinking of myself). Once I've absorbed that this is a benefit, & as my Monkeyhusband said, at least this way they're trying to be sure they blast it all! Plus he's commited to continue coming to all my appointments. Another bonus is, no cold cap! YAY SEE...am already looking for positives.

Will end here. Just needed to offload that. Am sure there'll be a few more tears, but that's part of the process, right? All part of the cancer rollercoaster 'stop, I want to get off' ride! 😘 Happy Saturday. Find something to do today that you love ❤️ I intend to xxx

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  • Hi Sarah.

    I was optimally debulked too. Told after that I was in complete remission. I had the three remaining chemos and also avastin. I've finished chemo now and like you have avastin every three weeks. I've 12 more to have. I asked if I need it but being as I'm in a trial I have to have it. It doesn't cause side effects like chemo and only takes half hour intravenously. You'll have a wash through too. I've asked if I can have mine after work and so that's how I will fit it in.

    Once we have this cancer, we are regularly monitored and so life is about blood tests, CT scans etc. You just have to try and get on with your life. You just have a new 'normal'.

    We are all here for you. Xxx

  • Hi Sarah, I know right now that this is a huge blow to you but this really is good news, good that you have been offered Avastin which gave me my longest remission to date, just under 4.5 years. The side effects are minimal, in fact I continued to work fulltime whilst on it and enjoyed holidays away. Before you know it you'll be at the end of the treatment and hopefully it will have been worth it. This disease is c**p and we just need to throw all we can at it. Oh and another bonus at least you'll be being monitored more regularly. Enjoy your weekend. Kathy xx

  • So a double whammy of shocks for you yesterday - the news about extended treatment and the horror (and it IS horror) of poor and painful treatment.

    If no one had spoken with you before about having Avastin then no wonder it came as a shock. You knew what your plan was and it suddenly changed. That's shifted what your new normal currently is. You will adapt but shock takes time to process xx

    The painful treatment is something that I would definitely be taking action about and I agree that you should ring on Monday and tell someone what happened. There's no need for that brusqueness and pain and she's lucky you didn't have an arm stretch reaction!

    Take time to process, write down your questions ready to ask next time.

    Hope you feel brighter and better today

    Take care

    Clare xx

  • Hi Sarah,

    I know you acknowledge this is your post, but I would have loved to be offered Avastin, but I didn't get it. It might seem like a long road ahead still, but each one you cross off will be a step closer to the end. Hopefully you'll feel a bit better about it once you've had more time to process it.

    Yosh x

  • Did they not involve you in the treatment plan before it started? That would have made the news easier to take. You can take holidays while on long term chemo they are very accommodating holding a week off etc. Try to have some non chemo week plans it does help. Good luck

    LA xx

  • Hi Sarah

    It is a shock when treatment plan changes . As you may remember from a previous reply I am a few months ahead of you on a similar path . Stage 4 and radical surgery 10th Nov . Now finished chemo and have Avastin only for maintainance . Had 2 nd on 24th Jan and was such a relief not having to wear cold cap and not taking up the whole day !

    My team kept changing their mind about whether I needed the Avastin so it took me a while to get my head around it but am glad now I am on it as it does mean we are getting the best chance of a longer remission and as you mentioned many ladies have not been able to get it which is unbelievable. As we go through so much on this roller coaster of a journey we shouldn't have to fight for the drugs we need .

    I have been ok so far on the Avastin . Did a 2 hour walk yesterday and got to the top of my favourite hill , something I'd never thought I would be able to do at one point after my surgery . ( even stopped raining so didn't get wet ! )

    Going to try a little cycle ride today .

    Next Avastin 14 th Feb ❤️so will try and plan a treat for after as hubby has been a superstar .

    Stay well and strong . Have a good weekend . Kim x

  • Thanks Kim that's SO reassuring, & with hindsight I know how very lucky I am. She did explain my chances of staying in remission for longer are increased by taking it. I'd be a fool for not following that advice. Once I've got used to the idea I know I will feel incredibly thankful x

  • You must have been taken aback when you realised you wouldn't have finished with chemo in March as you'd expected. As you say, you are lucky that your insurance is paying for the Avastin as most NHS patients can only get it either on a trial, or if they were left with tumours above a certain size (I think I've got that right, it seems to keep changing!).

    Before I had my op, I was told that I perhaps would be given Avastin and I started to investigate having one of the cycles in Australia, since I wouldn't have wanted to have to visit Australia and return within three weeks. It's doable I think in most countries, although you may have to pay for that one cycle yourself. So you might still be able to have long holidays!

  • I too am surprised you don't seem to have been involved in your treatment decisions. These should have been spelt out to you before it all started so that you could be empowered by making your own choices.

    There is little we are in charge of without effort when we have this disease so I think this shock out of the blue has knocked you for six.

    Like you said yourself, there are disadvantages to having Avastin as well as possible benefits.

    You don't have to have it even if you're in a trial. The decision is still yours. You can ask for another appointment to discuss the pluses and minuses so you can make an informed choice.

    That's just what I think though but it might make the difference in how you feel about your treatment and, if you do choose Avastin, you may feel better about your hospital visits.

    Sending hugs. Xx

  • Hi... so sorry to hear the frusration.. I know it's a bummer when you have something in your mind and it changes. I was optimally debulking surgery on Dec 6th. I'm finishing my chemo the beginning of March. What chemo are you receiving??? I'm on carbo/taxol. Curious because I asked my Oncologist if I would be on any treatment after or maintence treatment and he said no I didn't need it. So I'm wondering now...I'm def going to specify Avastin at my next appointment and see what they say.

  • Yes, I'm on carbo/taxol and have had 2 x Avastin already with those. I'm under a private Oncologist who is leading in her field, therefore I have placed my trust in her with regards to treatment. I haven't felt like I need control in that respect, as I'm content to let those who are specialists & know their stuff make the decisions for me. Perhaps that's wrong for some, but feels right for me.

    She said that evidence showed those who take Avastin are likely to have a longer remission than those who don't. We had discussed with her just before the stats on this disease recurring, & that you couldn't get away from the fact it was a high percentage. Therefore I DO feel grateful to be given this option.

    Perhaps you can discuss further with your specialist & see what options are open to you? Good Luck xxx

  • Ok thank you. I agree with going in the direction of your DRs they are the professionals with of course the knowledge you have gained. I will def ask them about the Avastin next time! Thank you!

  • I so feel for you my experience pales at the side of yours but the pain of the cannula every three weeks was so dreaded so I can totally understand by the end we had begun to make a day if it and have a little picnic with little treats etc.... something to pass the time ... you so look forward to the end and count them off ... one treatment day I had the shock of extra infusion of two hours no one informed me beforehand I was so upset... I think we have a plan we stick to to get us through and keep us strong ... if they make changes without telling us it knocks the wind from our sails ... we know in back if our mind it's best for us but we just think what more can they throw at us ,... sending big hugs 🤗

  • Hi Sarah

    You have some very good advice from others...I wondered if your Onc has explained anything to you about how Avastin works? It's not poisoning you like regular chemo..it's preventing blood vessels from forming which would allow new tumours to get established. Particularly useful for us stage 4 ladies who may carry microscopic cancer cells. That's why it's referred to as a maintenance therapy. The infusion is 30 minutes every three weeks and for most people it is fairly free of side effects. Each small bag of the stuff costs nearly £4k...so I usually toss my (short) hair and say 'because I'm worth it' after every infusion!! Xx Lyndall

  • Lyndall, yes I know you're right, she didn't go into too much detail but did say it does prevent further growth, & that it really helped prolong remission, plus I will have my CA125 tested regularly, which I'm sure will help allay any fears I may have, & that extra time may help me to begin readjusting to a new future.

    I know in my heart of hearts how lucky I am, & already I have started to accept this change to my expectations. Like everything that happens on this journey you have to take everything step by step otherwise it is totally overwhelming.

    Thanks for your post. It helps to hear from others treading the same path xxx

  • No need to feel guilty. That nurse didnt sound nice and hopefully you will get someone else while finishing treatment, Some are brutal doing the bloods others are great. Having said that my gp ruined my arm last May it was all black and blue I thought I would never get a vein. A phlembotanist working in my hosptial told me you either know how to do it or you dont. I havent had a port or line fitted so I imagine that may well be on the pipeline for further treatment. The Avastin isnt bad, its a nuisance going in every three weeks but as you get your strength you will be able to fit in the odd weekend away here and there. Do this to make the time go faster. I went to Malaga when I was on Avastin had no great problems there at all. You are probably still tired after all the treatment and surgery so its okay to be upset.

  • Hi Sarah

    It seems to be a bit of a lottery every time you have treatment with some nurses being really skilled and others just not so good at needles! I have just finished the 18 cycles of Avastin and awaiting a scan to see how things are but it was no real bother every three weeks as the treatment only took about an hour all told. I managed to do some amazing stuff last year and they were very obliging about delaying a couple of appointments so I could go to the U.S. on holiday amongst other things. I too am stage 4 and know that the chances of having to have carbo taxol again are very high but hoping the Avastin has helped put that off as long as possible.

    Stay strong and sending positive thoughts to you 💐✨

  • Hi Sarah. You caught that nurse on a bad day, didn't you. I'm surprised you weren't made aware of the forthcoming avastin. There are a few tests to be done before the drug company will take us onto the trial. Not difficult but have to be strictly adhered to. Your onc may know that you are eligible but the drug company will want to see evidence that the tests have been done.

    As regards holidays, I've never found it much of a problem. The drug doesn't make you ill, as chemo does, so you can go away right after the infusion. The trial people will agree to you putting your next infusion back by a week (well mine do, so I suppose all will), so you can be away for virtually a month. Mind you, you'll need to have your bloods taken and analysed prior to your next infusion. Can't have infusion without CA125 being known (that's my experience anyway). It's all worth it for that extended remission. Best wishes. Pauline

  • Hi Pauline, I'm not going to be on a trial. I have private healthcare so the Avastin is being made available to me automatically by my Oncologist as she believes this is the best treatment plan for my type of cancer, hence feeling very lucky really.

    X

  • I found out that they remove all my ovarian cancer with surgery and debulking, it was in my ovary and tumor only. So I've to get tested every month for 2 years straight. I feel extremely blessed and you still have that scary feeling it could pop up anytime again. I do have small nodules in my breasts, so I have to have a MRI for, but I'm happy things are looking better for you, and I wish all the ladies cancers could go away💕❤️

  • Hi Sarah,

    We are on a similar journey, I was diagnosed in august last year and had 4 rounds of carbo/taxol followed by debulking surgery on 13th Jan. I'm restarting chemo next week and just found out will start Avastin with the 2nd chemo.

    Avastin had been mentioned to me as a possibility a couple of months ago so I had time to read a bit about it but what I hadn't realised was that I'd be given it for a year.

    Like you I'd thought that after chemo my life would get back to some normality and it was initially a bit of a shock but as someone said we just have to find a new normal.

    I'm reassured that I may be able to travel while on Avastin as I've missed planning a holiday and my hubby definitely needs a break.

    Gill

  • Yes Gill, sounds very similar! I too, am longing for a holiday with my hubby. Seems like at every stage we 'evolve' to find a 'new normal' it's just a case of trying to adapt & accept this as best we can I think xxx

  • Dear Sarah

    I have been reading all the replies to your post and you got some very good advice which I hope will put your mind at rest . I think the chemo nurse didn't help by being clumsy and causing pain. We all come across one of those now and then but it's not deliberate , just inexperience sometimes.

    From what I have read and learned from this website the chance to be treated with Avastin can only be good. Anything that can prevent recurrence has got to be given a chance. Over 5 years ago it wasn't even mentioned to me with stage 3c PPC. When I discovered it after 2years NED I was just told I wasnt suitable . I will always wonder if I had been given the chance with Avastin if my recurrence would not have happened last year . I am still pretty upset about it. Anyway Sarah I just want to show you the other side of the coin. Please don't be too hasty in dismissing it. You can have some really nice holidays and breaks in between . We all want to jump off this particular roller coaster ! In the meantime good luck with all your plans and decisions .

    XXX

  • I so know how you feel. My last chemo was 10th August and last avastin may this year. Seems never ending. You will get your head around it but it is daunting. The chemo unit gets very boring now but I'm focusing on it keeping the disease at bay. Good luck x

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