The Neutropeen Queen!

Tried again today to get my 6th and final round of carbo done, and was turned away again (after waiting 4 1/2 hours, but that's another story altogether). My neutrophils are even lower than last time, which is something of an accomplishment I suppose. It's disappointing, but I went in this morning trying to keep my expectations in check, so that I wouldn't be completely gutted if we had to delay further.

Earlier in the week, I spoke with an oncologist who said, where I'm not handling the chemo well but otherwise it seems to have had a therapeutic effect (CA125 now within normal), other doctors might say it was okay to stop after 5 treatments, but she thought we should just see it through.

At the time I agreed with her, but now I'm starting to seriously consider declining the 6th round and calling it a day. I wonder if it would make a huge difference at this point, either way. And it's "only" adjuvant therapy. I'll follow up with my med onc team next week but my gut is saying, that's enough.

I've not seen my family in over a year now, thanks to all this cancer malarkey, and I have a trip booked to go home the first week of April. So that's a factor too. If I get a 6th round and become neutropenic again, or get an infection, I won't be able to go and my heart might actually break. I think hugs from my parents, sisters and brothers, nieces and nephews, might do me more good than the chemo! :)

Thanks for letting me rant. This group has been an amazing source of support and inspiration for me.

Love to all from Kerry xx

38 Replies

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  • Good to hear your CA125 is normal. That shows the chemo has worked. There are injections you can get to help with low neutrophil count. Maybe worth seeing if you can get them if you have to consider a 6th cycle, use it as a negotiating tool with your oncologist. There have been some posts on here where some ladies have cut their chemo sessons short. I agree that in the bigger picture a bit of family TLC would be of great benefit to you. Fingers crossed for a good solution for you. Nearly there. Your family will be over the moon to see you too.

    Love and hugs.

    Loraine 💙. Xxx

  • Thank you lovely! I didn't speak with an oncologist directly yesterday, but my chemo nurse went off to chat with the doctor on duty while I waited. Apparently he said, if my levels aren't better next week, they'll give me the injections. My plan is to speak with someone on my med onc team Monday, and I'll listen to whatever they advise. I don't want to make a hasty decision but if they're happy to let me skip the last one, I'd be fine with that :) Thanks so much -- hope you're doing well! Love and hugs back! xx

  • Hi again Kerry

    please don't miss the last chemo. I know how you feel, but the essence is, that you might later on have trouble facing yourself, that you didn't do what ever you could. My experience is, that I had difficulties with infections on the the first, second and third chemo, but had less infections on the last 3. I had, as you, so many thoughts about the last one ( my cancer doesn't respond so well on chemo) and I was sick and tired and wanted it to end. But kind people persuadet me to continue, and today I am glad they did . Everything went well and I am sure it will do the same for you. In few days your blood test will be ok, believe me.

    Hugs to you

    xxxx Ulla.

  • Hello again Ulla! Thanks very much for sharing your experience. I agree with you that I don't want to have any regrets if I don't finish! I will do whatever my team advises. I hope you're feeling okay today. Hugs from Kerry xxx

  • Hi Kerry, totally empathise with you as I had the same problems with very low bloods.

    I think you should go with your gut feeling! It's your life, your body, and if you feel well and your CA is down, well that's a good sign that the chemo is working.

    Enjoy your holiday

    Much love Jackie O x

  • Thanks so much, Jackie! I'll do whatever they advise me to do; I don't want to take any unnecessary chances. But if they're not very concerned about doing 5 rounds instead of 6, I'll happily pack my bags and go home for a few weeks! Thanks ever so much for the encouragement. I hope you are well!

    Love from Kerry xx

  • I suspect they're more likely to drop a cycle on the grounds of durable side effects, like very bad neuropathy or allergic reactions.

    My team dropped my 6th round of carbo/taxol. I think it's not an exact science and they're not able to demonstrate that 6 is better than 5 in all cases. 4 seems to be the magic number to get beyond.

    Did they confirm that you don't have any infection which could be pushing the neuts down?

    Did they decline to give you the G-CSF injections?

    That seems a bit shortsighted, especially in view of your travel plans. Did you tell them about those?

    You need a day's break between an injection and chemo. In my experience, even one jab pushed my neuts way above normal. I was able to have rescheduled chemo 2 days after the original planned date.

    If you didn't ask/tell them about either or both of these yesterday, I suggest you ring them on Monday.

    Good luck!

  • Hi, did you have bone pain with low wbc? Did you develop bonne pain after the injection? Ann

  • I did the first time I had the injections, but I'm not this time.

    The first time I had (can't quite remember) 5 or 7 consecutive days increased to 7 or 10 days and found it hard.

    This time I have injections days 5 and 6 so I'm fit for the day 8 gemcitabine. Then 3 days, days 11-13 to get ready for the next cycle. I'm amazed not to notice it at all and also how quick the effect seems to be.

  • Hello! Thanks for this reply; all very useful information! I was told that if my levels aren't back up next week, they'd start me on the G-CSF injections. This came from the oncologist on duty in the treatment centre, not from my own team, as it was after 5 on a Friday and there was chaos happening everywhere. So I will ring my team on Monday and discuss all of the above. I'll do whatever they advise -- I don't want to leave anything to chance but if they're not convinced a 6th round would make much of a difference, I'm happy to skip it. Thanks so much again - hope you're doing well! x

  • Hi Kerry .. You're obviously missing your family a great deal. I think there may be 'what ifs' if you don't have it. Why not call the consultant's secretary and explain your situation. Mac has an idea there about the injection. The decision to leave the last one may have already been made. Love and hugs xxx

  • Hi Tina! That's a really good point. Where there wasn't time to speak with my team on Friday, by the time I get through to them on Monday they may have already decided. I'll be happy to do whatever they advise. As you say, I don't want to have a "What if..." situation! Thanks so much for the advice - hope you're doing well. Love from Kerry xxx

  • Hi Kerry I know how you are feeling. I have the dubious distinction of being the Oncologist's (fairly new in post) longest serving patient because of low blood counts. I counted up I am now 19 weeks in and still have two more sessions to go. I was cancelled again this week despite only having reduced dosage of carb instead of duo carb/gem and G CSF inections. It is a real pain and so unsettling. Push very hard for the injections but if you feel well, CA is normal and altering your holidays plans is going to be costly and disruptive I would have a frank discussion about how much difference the last session is really going to make. A Registrar told me chemo dosage is not an exact science so if your Oncologist thinks other medics may disagree and that you have had enough perhaps they, and your gut feeling are right and what you need is to be with your family. The aim of all this frankly miserable treatment is to give us more time to enjoy ourselves not to make us slaves to it and in my view a balance has to be struck.

    Best of luck whatever you decide,

    Rita

  • Dear Rita, I see you've stolen my crown. You poor thing; you must be absolutely shattered and so incredibly frustrated. I hope you can get your last two treatments done as quickly and easily as possible. Your last sentence really resonated with me -- very wise words and I will take them to heart. All the best to you, Kerry x

  • It is a difficult situation for you if your oncologist is saying have the 6th session. My oncologist made the decision for me saying it was too great a risk as a result of the effect the chemo was having on my bone marrow and consequently on all my blood counts. He assured me there would be no difference in the outcome. I too was on adjuvant therapy following surgery. All good so far and hit two years cancer free yesterday ~ bit if a weepy day which caught me by surprise. Maybe the chat on Monday will help you decide what is best for you. I agree it is your body and your decision but do try to get your oncoligist's agreement for what you want to do. Love Val x

  • Good morning, Val! Thanks so much for the reply, and congratulations on your two-year achievement. I can imagine it must have been emotional for you... my guess is, it's got to take a lot of time to really process all of this. Whilst going through treatments etc., the focus is on day-to-day survival mode, so it may take a long time before all the emotional impact can be dealt with. I think our situations may be similar and that my oncology team may already have decided to drop the 6th round by the time I get in touch with them on Monday. Happy to do whatever they advise, but would be thrilled if they told me I could stop! Thanks again and all the best to you!

    Love, Kerry xx

  • Hi Kerry I can't really add to what the ladies have said, hope you and your medical team come to a decision you are happy with and what's best for you physically and emotionally best wishes big hugs xx

  • Thanks so much lovely! I'll be a good girl and do as they advise of course, but I'd love to be done with the treatments soon, one way or another! :) Big hugs back to you xx

  • Hi Kerry, its so disappointing when this happens. Whilst on first line treatment I had delays after my second cycle of 8 weeks.of course I had to keep going as wasn't far enough along to consider otherwise but you have onbly one more to get. Its difficult, I myself however feel its best to do what the oncoloigist advises. Perhaps next week will bve your week and they can reduce the dose four you so it won't gave sucgh a big hit on your wbc. Ann x

  • Hi Ann,

    Oh my goodness, 8 weeks must have been so frustrating, knowing you had to keep going. And going and going. I hope second line is going okay for you? Have you had the latest scan for the trial? Sending you all best wishes on that score. Thanks so much for the advice. I absolutely will do whatever my team advises; I won't want to have any "what if" type regrets. Hope you're holding up okay xx

  • Thank you. No, I've just had first cycle on Monday and no sleep Wednesday or Thursday due to horrible bone pains again. You'd think they could come up with a way to combat them! Wishful thinking on my part I think! I get scan about 2 weeks after my 2nd cycle which is scheduled four 14th. Getting a PICC line that day too. Sometimes I don't know whether its easier to be afraid of the unknown or the known! Hope your wbc is on for next appointment. Ann x

  • I'm so sorry you're in so much pain, Ann. I wish there were something they could do for you. Hopefully it's eased off a little by now? I'll be sending you all best wishes for your second round, and scan, and PICC line... you've got a lot to contend with and I hope you're not struggling too much with anxiety about it (more wishful thinking, maybe?) All the best to you. Kerry xx

  • Sending hugs to you Kerry and especially as you haven't been able to see your family since getting cancer. That must be awful and leave you feeling isolated. I hope you have good close friends round you and that you are finding ways of keeping up with family.

    I can imagine you are wondering whether to have that last dose of chemotherapy and remember thinking exactly the same at the end of my first line because I was demob happy.

    They don't know exactly how much chemo does us good but six sessions for cargo-platin and paclitaxel has, based on statistics, seen to be the best 'one size fits all' solution. It is important we feel in control of our treatment plans and I would just say, five years along the line, to think carefully before you go against your team's advice because things have a funny way of haunting us - and we might wonder if we'd had that last session whether we'd have had an additional few months' remission, and such like.

    It is so frustrating to have low bloods. It makes you feel listless and generally unwell. Unfortunately there seems to be little one can do but wait unless it becomes chronic and it would be better to have a transfusion.

    I do hope you can finish your chemo treatment very soon and book a holiday home to see your family. xx love Annie

  • Hi Annie! Thank you so much for your thoughtful reply. I agree with you and the others who have said we don't want to have any "what if?" regrets. I will absolutely do whatever my team advises and do what has to be done. You are right, it has been incredibly isolating to be going through this alone, especially as I don't want to worry my loved ones at home more than they already are, so I tend not to tell them when I'm feeling really low. Thank goodness I found you all here on this forum -- you've been amazing. Love from Kerry xx

  • I am interested to read this thread, I am in Ireland and it's standard here to give the Neulasta injection with Chemo. I self administer the injection between 24 and 72 hours after Chemo and to date I have had no problems with blood count. I have experienced some what I would describe as bone ache rather than pain and haven't had to take pain killers for it. It comes the day after the injection for about 3 days. I think I have been lucky as my sis went through Chemo for Breast Cancer last year and she too got the injection and did have pretty bad bone pain so again as with all of the treatments everyone reacts differently!

    Is the injection not given as standard in the UK? I asked my pharmacist about it and she told me that each injectioncosts €1800.............!!!!!!!

    Dx

  • Hi D, wow that's amazing. I knew they didn't just hand it out to anyone, but I assumed it was for clinical reasons. Now I'm inclined to think it's because of the costs. Holy moly! I'm from the States originally (now living in England) and it's pretty common there not to be offered something because it's cost-prohibitive but as a rule that's not been my experience here. Well hopefully I won't need it! I hope you're feeling okay this weekend. Hugs xx

  • Hi Kerry

    I was scheduled to have 8 sessions of Carbo/taxol - 4 before debulking surgery and 4 after. After the 7th session, I developed a high temperature and was diagnosed as having Neutropenic sepsis and spent 6 days in hospital just before Christmas, had daily injections to boost neutrophils and had 2 blood transfusions. My oncologist decided not to proceed with the 8th chemo session and I was quite happy to go along with that decision as I felt my body just couldn't take any more. The oncologist said that 6 sessions are the norm, so he wasn't too concerned if I missed the last one. Personally speaking, I am inclined to go with the advice given by the medics and I put my trust in them!

    I am in Ireland, and as Dx said in her post, Neulasta injection is standard in Ireland after each chemo session. However, I stopped taking it after the 6th chemo because I had really bad bone pain, but as a result my neutrophils were extremely low and I ended up in hospital feeling really unwell!

    Good luck with whatever decision you make!

    Juliet

  • Hi Juliet,

    Oh bless you, sounds like you were put through the wringer. I hope you are starting to feel better now you've had a break from the chemo? I agree with you in that I'm inclined to go with whatever advice they give me too. If the 6th round is the magic number, bring it on! Otherwise I'm quite happy to be done with it. Thanks so much for your reply and I truly hope you are feeling well! Kerry x

  • Hi Kerry, just a suggestion, you want to go home so could they arrange for your last treatment while you are at home. Surely they can fax the script to your nearest oncology unit and with the help of your family this could be arranged to suit you and your team if that is what they want you to do, Anyhow wish you the best on Monday with your quest.

  • Hi Suzuki! Oh my mum would love that. She's been trying to get me to have my treatments in the States since all this started, and I would have been glad to, but I don't have health insurance there anymore. I'm a dual citizen paying taxes in two countries, but only one of them provides healthcare! It's a very interesting idea though and one I will consider if they want me to have that sixth round. Thanks ever so much -- hope you are doing well and enjoying your weekend! Kerry x

  • Hi Kerry,

    I'm sorry that u were turnd away again . I'm in the same situation and it's so hard .. Mine it's in Monday and I really hope that my wbc are back to normal . But I understand how u feel is it worth waiting . I don't know it's crazy . But hang in there talk to the doctor and do what makes you happy .. I wish you the best xo Suela

  • Thanks Suela! Thank you so much. I'll be thinking of you and wishing you the best for Monday. I really hope it goes well, and your cold is better, and your little one is feeling better too! All the best to you xx

  • First time round I had one dose only, it was curative (ha ha), and didn't tolerate it well. Plus after long chat with the oncologist and my anti poison moan, we agreed that as it was stage 1 and there was no evidence of disease plus my CA125 was 7 to give up.

    I am still happy with my original decision, and am not doing so well this time round, keen to give up after only two sessions, but hubby won't hear of it. The idea of chemo is to improve your quality of life, I also know some who had four sessions as adjuvant, which is how mine is described this time, as a standard prescription from their oncologist.

    If it were me I would follow my instinct, if it's too unbearable or unmanageable then it defeats the object.

    LA xx

  • Thanks, Lily-Anne. I really am so sorry you are struggling so much with the chemo - my heart goes out to you. It's just an evil evil evil bugger, and no mistake. I wanted to quit after two rounds too. I just felt so very low and fragile and weepy all the time that I got to the point where I was telling people "I'm quitting it, I don't care if the cancer comes back." Looking back to only two months ago, I can't believe I felt that way, but I truly did. I can report though that rounds 3-5 really were so much better. They'd lowered my dose and tweaked my meds, and it made a huge difference. I hope yours get a bit easier too as you go on. All the best, Kerry xx

  • I think you are amazing. You've been through the mixer and back again. I'm sending every spare good vibe I have to you and know that you will make the right choice.

    Hugs

    Debs xx

  • Aww thanks so much, Debs! I feel like I'm in a good place with whatever happens... posting here was a huge help in that regard. Amazing to feel such support from you all.

    Kerry xx

  • I am really grateful that this discussion has happened as a result of Kerry's post. First of all, good luck Kerry and I really hope it all goes well for you. Secondly, I've had 4 chemos, had the surgery (still recovering) and I have tried convincing myself so many times that I can manage without the chemo next Monday, and then 3 weeks later. Surely I'm OK, I tell myself, do I really have to have the next 2 chemos? They've told me I'm 'disease-free'? In one of the posts, someone says 'what if', and it really is that niggling 'what if' that will make me take up my reclining blue plastic chair at 1020 next Monday, and offer up my (now very skinny) wrist, and hope that it doesn't take them too long to find a vein that hasn't completely collapsed. We just don't and can't know can we? That's why we keep going. Haven't we all been through more than we would ever have believed ourselves capable of dealing with?

    Love to all, Phia xxx

  • Hello, and thank you! My apologies for the late reply to your lovely post -- I've been off the radar for a bit but I'm doing okay. Did you end up having your 5th chemo? I hate the thought of what-if? but at the same time, there's a point where your body says, I need a break please. Whatever has been decided, I hope you're faring well and feeling positive about being disease-free and so close to the end of your treatments. All the best, Kerry xx

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