Starting chemo again tomorrow

edited November 2019 in Welcome & Orientation

Hi all,

I’m starting chemo again tomorrow as it’s been 5 weeks since I had surgery. Hopefully I won’t have to many side effects this time round. My hair had started to grow back so I’m hoping it won’t fall out again, not much I can do about it if it does. But I have been using a shampoo to stop hair fall so who knows. I’ll try anything once or twice. Not looking forward to stating chemo but looking forward to seeing all the oncology nurses they do make the day much more pleasant. My ca 125 level has come down to 20 (when I was first diagnosed it was over 2000) so I’m hoping that will drop more. Doc was pleased with results because I have responded really well to everything so far. Anyway on a different note I would love to hear where everyone is from and how everyone is doing. I’ve noticed a lot of people haven’t posted anything for a long time and I’m curious as to how they are going. Maybe one day we can all meet up for a cuppa. Anyway I’ll let you all know how I go With chemo. Dionne


  • Hi Dionne,

    Good luck for chemo tomorrow and it's great that your responding well to treatment. Be positive your more than halfway through your treatment, and it will be over before you know it. I really loved my oncology nurses too, they are such a great bunch of people. I'm from Sydney but was living in Bali when all this happened. So I had my treatment in Sydney then back to Bali as soon as I could. I'll just fly back for my 3 monthly checkups. I decided to keep moving forward with my life and just live in the moment as much as I can. I'm feeling pretty good and getting better everyday and also back at pilates, riding my motorbike and sleeping well. Can't do as much as I use to but it's a positive to take things slower. I have my moments (I had a good cry today) but most of the time I'm happy and feeling well. Some days I even forget that I had cancer. Chat soon, Alice

  • Well starting chemo again got off to an interesting start. Got a phone call at 8:30am from the day unit asking if I could go in early because they didn’t get my LFT test (liver function). The test that’s suppose to be done every week. So my husband and I go in 1 hour and a half early ( appointment was for 11:30 to start chemo) to get blood drawn. Could understand how this test was missed. Anyway had blood drawn, left to have coffee at Macca’s visit my son at work, as you do to kill an hour. We back to cancer day unit started chemo. It was a double so 3hrs later it was finished, all went well. On the way home we stopped in at the pathology place I get my bloods done at and my doc had accidentally put this to big and put the LFT test with my CA 125 which he does every 3 weeks instead of every week So the ladies read it wrong. I've been going there since this all started they know me and why I get bloods so you would think they would have picked it up. Thankfully they fixed it so next week hopefully it will be right. But trust me I'll be checking. So ladies Just make sure you check all requests from your docs, after all they are only human too and also make the odd error. It was an extra long had a little nap and going to start exercising tomorrow. Build up my muscle tone again.

  • Hi Dionne,  How are you feeling after your chemo a last Thursday?  I hope your treatment went well and you are feeling ok.  I have had to wait on blood tests and it is a bit frustrating, however they do mark it urgent, which quickens it all up a bit.  Thanks for warning us about checking what the oncologist has written on the pathology request form.  I have been away for a few weeks and had to have my pathology test in Victor harbour and the place I went to were excellent and quite happy to accept my doctor's pathology request form and they faxed my results through to my doctor.  I had my third cycle of carbo platinum on Friday and am feeling a bit tired today, so having a quiet day at home.  I agree totally with you about how great, friendly, supportive and nice the oncologist nurses are.  Take care.  Helen

  • Hi Helen,

    All went well with chemo. Felt nauseated for most of the week, that’s the only thing I hate about it. I can handle the fatigue. I’m on carbo and taxol. I had both last week, tomorrow is just taxol. So I have 1 week double, 2 weeks single. This will be for 6 weeks I think. They are using the same platinum ones because it shrunk my tumour right down to the point you couldn’t see on the ct scan before surgery. Just hating on the nausea. I read in another post that your holiday was wonderful, and I’m glad you had a wonderful time. I want to source other methods to treat the nausea because the anti nausea meds cause other issues like constipation which is annoying. Anyway I’ll keep you post on my results as I get them.

    Take care, Dionne.

  • Hi Dionne,

    I see from your post to Quilty that you didn't have the nausea this time, how good is that.  It makes such a difference if you don't feel sick all the time and it is good to feel like eating!  Was there something that you did differently this time to stop the nausea?  I have my next lot of carboplatin next Friday.  Enjoy the Easter break.  Take care Helen

  • Hi Helen,

    This might seem a bit weird but I kind of put it out to the universe that I’m happy to deal with the fatigue and the aching bones but I don’t want the nausea. I just kept repeating it, I even whispered to myself as I sat waiting to start chemo. I do sometimes believe in mind over matter. Who knows maybe it’s just a coincidence. I also discovered that fruit tingles help with that bad taste you can get. Which anti-nausea meds do you take. I found Maxolon didn’t work when I first started chemo, they actually made me worse. I have Ondansetron, you dissolve them under your tongue. But I haven’t taken them for 2 weeks. But they worked really well. When I was taking them I didn’t wait for the nausea feeling to start, I basically started taking them 30 mins before I ate even if I wasn’t feeling ill and took it every 8 hours. That was my first week back.

    I’ll put it out to the universe for you too for next a Friday, any help we can get I say.

    Take care, enjoy your long weekend.


  • Hi Dionne,  I just realised I hadn't replied to your post.  The anti nausea meds that I take is Maxolon and I find it works well.  Like you I tend to take it 30 minutes before I eat even if I am not feeling ill and I usually take it for about 2 - 3 days, a few days after I have had chemo.   Thanks for the tip about the fruit tingles for the bad taste in your mouth, I will try that the next time I have chemo.  I am having a change from the carboplatim and am having taxol for a few cycles.  I will probably have the taxol each week.  I like your mind over matter theory and will try it next Friday.  Take care  Helen

  • Hi Helen,  I too have taxol weekly but carbo every 3rd. Double dose. Still doing ok with the nausea, haven’t really had any. Been finding it hard to cope these past few days. Just been getting very down and scared what the future holds. But I also think it’s the drugs and chemo that give you depression. I try and be strong and positive and yeah I do have my good days and weeks, but then something happens and I’m in a low again. I have genetics testing tomorrow, which I’m finding very overwhelming right now as I’m not sure what to expect. I have 5 more weeks of chemo left, then it will just be going back for port flushes every few weeks and the usual check ups. Sorry for the downer post. But on the bright side give the mind over matter a go, I’ll even put it out there for you Helen just like I keep saying this whole thing ain’t coming back.

    Take care


  • Hi Dionne, I can understand how you are feeling down at the moment, it is such a challenge to get your mind around all that is going on with your treatment and tests.  The genetics test is a big deal and can be overwhelming.  I was totally shocked when mine came back showing the BRC2 mutation.  Once I had absorbed the news, I found out that there were a number of positives.... it does give you other treatment options that are not chemo with minimal side effects, there is lots of research going on for these gene mutations, my family members who after testing had tested positive for the gene were able to take preventive options to reduce their chances of getting ovarian cancer and they were able to access lots of information and lastly it kind of explains why I got the disease.  Don't forget it takes about 2 months for the genetic results to come back.  Your chemo treatments will be over soon and you can look forward to getting back to your normal routines and feeling much better.   After the genetics test, go and treat yourself to something nice.!!!!  Thanks for sharing your mind over matter.  Take care  Helen

  • Hi Helen,

    Thanks so much for preparing me for the genetics test. And I’ll keep you posted. Since all this started I now suffer from anxiety so I might have to take half a tablet before I go.

    I’m very pleased to share my mind over matter with you and I hope it works for you, it’s been working so far even with the double dose. So this Friday I’ll be putting it out there for you. It sounds silly but I just say I can handle the fatigue and anything else but please don’t give me the nausea. I say it a few times.

    Take care and. Stay safe and let me know how you go.


  • Hi Dionne,

    I have had two lots of Taxol now, I didn't seem to get too much nausea and only had to take the maxolon tablets for a couple of days.  I tried the fruit tingles and they certainly relieve the funny taste in your mouth, thanks for that hint.  I didn't seem to have much fatigue, it is probably because I am just on the Taxol.

    How did the genetics test go?  I found all the family medical history questions that you had to answer a bit draining.  I am glad I knew a fair bit of my family's past medical history and I had written down some dates.  I gave this information to my brother and sister so they were prepared when they went for their genetic testing and to ensure our information would be consistent.

    Take care Helen

  • Hi Helen,

    I’m glad you did a lot better with your treatment this time. I found the genetics testing ok I got very emotional and found it a bit daunting. Still have a few weeks to go before I find anything out. I’m still finding it very hard to cope with the diagnosis.  Do you have Facebook Helen? You should join the ovarian cancer Aussie support group.

    Glad the fruit tingles helped too. I’ve omly got 3 more treatments to go then I’ll be having my first pet scan at the end of May ( which I’m totally freaking out about. I get very anxious with tests ) and then just check ups. I’m starting to get very worried about reoccurrence. Well I would say worried is an understatement, trying to get by everyday. I hate that my husband has to go to work, cause then I’m alone all day. Which is why in stressing about finishing treatment.

    Any glad your well. Take care. Dionne

  • Hi Dionne,

    How are you going?  My Taxol treatments are going well.  My hair started to fall out so I decided to have it shaved off and I found my wig and head scarves from 4 years ago that I had thrown at the back of my cupboard.  They seemed to have survived the break.  I have also shouted myself some new caps.  Try not to worry about a recurrence.  In my case it was 15 months before the cancer came back and like Jenny I decided to live in the present and not worry about it coming back.  Plus there are so many different chemos and new research to help us.  Even though you are stressing about finishing treatment, I am sure you will find the relief of not having the chemo and having to manage the side effects, will make you feel so much better and your energy levels will improve so you will be able to do your normal routines and try some new things.  Take care  Helen

  • Hi Helen

    I’m good, last treatment tomorrow. And then pet scan which I’m anxious about. Never had one before. I am trying not to think to much about my last treatment but it’s hard when it’s like your security to stop it from coming back. I’m made an extra appointment with my oncologist to talk to him about the scan and for him to give me something strong to take. I’m still waiting for the gene test to come back but that doesn’t worry me to much it is was it is so yeah all’s good with that. I’m keeping my port in so I’ll go and have that flushed every 6 to 8 weeks, sounds silly but that will become my norm. Yeah worse part is the hair falling out, will be glad when it grows back and it was after I had surgery but then started chemo again, it’s the pits. You should go join the Facebook group Helen. I’m trying to focus on being positive for tomorrow. How are you going with the taxol. I still didn’t get the nausea but I did get the fatigue, especially the last 2 treatments and bone aches in my hips and legs. Then some weird itchy rash thing on my arms but went away but anything is better than the nausea. I now have like these bumps on my head and back of neck but I think it’s from wearing a The beanie so only wear it when there’s people around..

    Great to hear from you Helen and I’m glad your well. Now come join the other group too.

    Take care, talk soon


  • Hi Dionne,

    I thought I would just check in with you to see how your pet scan went.   Are you starting to feel better, now that treatment has stopped?  I have looked at the Facebook group and  I will join up soon.  We are about to transfer to the NBN, I may not have access for a while to the internet.  I hope it goes smoothly.   The Taxol treatment is going well and I am very pleased that my CA125 marker has been halved and is coming back down again.  That was a great relief!  I have been eating lots of fruit tingles, to alleviate that horrible taste in your mouth from the treatment.  It seems to hang around day 2 and 3.  Take care  Helen

  • Hi Helen,

    Havent had the pet scan yet having it this Friday. It’s freaking me out. But I got the doc to take the brain scan part off and gave me Valium,But it’s still making me very anxious. Never done scans on my own my husband has always been there. Glad the fruit tingles are working, they worked well for me.

    Yeah starting to feel better but I’m finding my anxiety has increased and stepping away from the safety net of chemo has really made me quiet scared and unsettled. Don’t think I’ve every been so scared in my life. Trying to keep busy, but it’s hard when I’ve gone from having the hubby home to having no one. Use to love being on my own now I don’t.

    Getting nbn, I’ve had it for sometime now. It shouldn’t interrupt your net for to long. Mine didn’t. Looking forward to seeing you in the other group. So much easier to chat.

    Take Care Dionne


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