Happy new year everyone, I’m hoping and praying that we all have some better days in 2022.
I’m starting off the new year on Tuesday with my fourth course of Chemo which will be weekly Taxol for probably 20 weeks. Can’t say I’m looking forward to it but trying to gather my strength and positivity.
Been living with this flipping disease for over 3 years and have generally, treatment permitting kept positive, well and very active. Now tummy trouble,(got IBS too) insomnia (doc is giving me some meds) and trapped nerve in my neck all conspire against me.
Sorry to sound moany and thank you for reading. I try to protect my family & do not share my concerns with them so it helps to share here. Also any tips for coping with this next challenge would be very welcome.
Jan. xx
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Thanks for your reply Sassy. Now I feel I have a fellow traveller on the next leg, as you say let’s hope and pray Taxol does for it. Also I see you too enjoy poetry. Recently I was given Henry Normal’s Escape Plan collection. Don’t know if you are familiar with his work, he had a programme on radio 4 at one time. His themes and styles are wide-ranging but thought I’d share this little one in the hope it makes you smile.
I really hope this treatment kicks this awful disease into touch for you and Sassy196. My disease is stable but I feel really depressed about it. How long can it stay stable for. Sending you both love and prayers Sheenagh xx
Hi sheenagh, I have been stable for almost 4 years. I was stage 3c carsinosarcoma . I had a good response to chemo. I have scans every 3 months and have been stable throughout. I know what you mean when you say for how long, and we dont know, but I feel ok so I make the most of it while it lasts. Hope this new year will be a Positive indoor you. Anne xxx
Dear Anne l notice with interest that like me l had good responce to chemo 2 years aho Carbo/Taxol but now lm on 6 month blood test which leave me feeling insecure to be honest lve had blood tests at my Doctor's inbetween which lm glad l did l think with our condition 6 months is far too long to wait. And glad l did because my CA125 as risen quite alot still normal but lm not happy about the rise. Go tomorrow thank goodness but l noticed you mentioned you had 3 monthly scans l only seem to get one when l ask which l will when the Doctor rings me Thursday. Just my mind thinks surely they should do this automatically for us all we know uts not gone away but l for one dont want it to spread anywhere else.Good luck everyone, just feel at the moment we have to make sure were checked properly. Sending love & hugs all take care.
Dear Sheila, I should have gone to six monthly 6 months ago but there was a bit of a hiccup which happily turned out to be nothing but they did keep on 3 month till November just gone. I will now go to 6 monthly. The scan appointments are just sent to me I don't have to ask.I do agree that 6 months is a long time between scans, though the blood tests would help, I don't know if my Gp will agree to that I will have to ask. I do hope your CA125 continues to stay within the normal range, it's so worrying when it goes up, any slight rise could be due to a mild infection of some sort.
I hope your meeting with your Dr goes well, take care.
Thanks Anne, l didn't see a Doctor get a tel results tomorrow hoping there ok lm sure they will be. Just think 6 months is too long to wait in-between lm going to discuss that tomorrow . The system had gone down in the blood dept today it was freezing 🥶 my poor husband was sat in the car freezing. But we went for a nice lunch after so everythings got a bonus. Please take caresending love & hugs Sheila xx
Thank you for your reply. Usually I’m a ‘bring it on’ kind of woman. Quote from my oncologist last chemo was ‘ patients don’t usually walk 4 miles a day when they’re on chemo’ This time round Im struggling a bit, so I’m thankful for your encouragement.
Happy new year but that sucks about the chemo! I haven’t had that regime but it seems quite effective. The nerve in your neck sounds painful. I have that on and off. You might be able to get an injection for it. Or the steroids for chemo will help it. I found that all my usual aches and pains were gone during chemo! Sending hugs.
Yes, chemo comes with added extras. Oncologists often aren’t interested in the joint pains, fatigue and other ‘add ons’ that come with OC and its treatment. You have to seek help elsewhere. This forum is a good place to find understanding, that’s for sure!
I went to my GP for a referral to a rheumatologist but given the 8 months expected waiting time on the NHS I went private, the first consultation was £60 and worth it, it was £120 for a steroid injection. Do you see anyone for your IBS?
If you can budget for treatment outside NHS it’s worth going down that path but there are other options. Your local hospice might offer complementary treatments if you’ve had a diagnosis of ‘palliative only’ (and I’ve had 5 GOOD years as that, and expect to have many more).
Otherwise just be kind to yourself. You should tell others that when you say you’re ok, it doesn’t mean that there is no pain or discomfort- just that you can manage it. Your family and friends NEED to know!
I have found that those close to me like to be able to do things for me, even if it’s just hubby heating up my ‘wheatie’ for my back pain. Don’t try to hide it from them Jan, give them the chance to help you, it can be in very little ways but it can help everyone.
Yes, this flipping disease just keeps giving, doesn’t it?! You have to grab anything that helps you cope with both hands, help from others and outside help. Also any distractions you can manage (I draw and paint).
Thank you for your suggestions Iris. My GP helps me manage the IBS but to be honest with Omicron on the rampage and beginning new chemo I’m a bit nervous about trying to see any one else about the trapped nerve. My hubby looks after me very well but I have a tendency to be fiercely independent at times!
Got some jigsaws lined up and had several good books bought for Christmas presents to distract me.
Hi Jan all the problems you mention are typical of anxiety: IBS, insomnia and trapped nerve and no wonder you have that! I take Buscopan for my tummy when it flares up. Melatonin for the insomnia and ask anyone in the family for a gentle neck, head and shoulder massage when I’m tense. It usually works. Sometimes I think all we need is a bit of understanding contact to feel more relaxed so if you can, ask. If you have a Maggies or cancer centre they offer such treatments too. Good luck. Maria.
Maggie's In Sutton Surrey don't offer any treatments though apart from walk in for cup of tea and a cry )), group meetings on line, group of walkies once a week .No massages no acupuncture. But its stunning new centre, very lovely interior. Hospital doing it but only 4 massages and 6 acupunctures only for menopausal symptoms. Then they now giving you after a supply of needles and instruction how to do it at home DIY. Only 4 needles in the feet allowed ))
Thanks for your tips Maria. I think you are right there’s a bit of a cycle going on with my other symptoms. We have a lovely Maggie’s at St James’s hospital in Leeds but no treatments on offer. My husband goes in there for a cuppa whilst I’m having my chemo and has met some others there doing the same.It’s such a beautiful environment.
I too on the same journey and begin weekly taxol again this week , this will be my 9th one and my hair is now very thin , and find it upsetting as can feel it on my pillow .
My journey started Feb 2020!and diagnosed with mucinous OC so very little evidence of what works , I had carboplatin after my debulking surgery, but unfortunately a reoccurrence in peritoneum with mets in my liver and carbo resistant.
I have been told it’s inoperable and incurable which I’m finding hard mentally to deal with .
I have my oncologist appt Tuesday for the results of my CT scan and so frightened and anxious to what this will tell me, and if the chemo is doing any good , don’t really know if there is any further options or treatments for me😓
I wish all the Teal sisters good luck with their own journeys
Oh Margo I am hoping and praying that the scan shows the Taxol is working for you. Although not very knowledgeable about Mucinous I understand it responds different to the most common serous type of OC.Maybe there is someone on this forum who can point you in the right direction if a different treatment is needed.
Being told you are incurable is I think the hardest news to deal with. I would recommend counselling - McMillan can help organise it. I’ve found it so beneficial .
Thinking about you and sending love. It is an awfully testing disease. My stomach, intestines and bowels stopped working for two and a half months and the pain was ghastly, but they have got things going with 28 pills a day. Wishing you strength and a long long happy life ahead x
Thank you for sharing your experience - that’s a long time to suffer like that and I’m so glad things are ‘moving’ again for you. Sometimes these ‘add ons’ are worse than the symptoms from the flipping OC.
Today I’m in the let’s keep on keeping on mindset, so let’s do that together.
Taxol weekly is well tolerated. Wear an ice cap to keep some hair. I found a light fast the day before and day of helped eliminate fatigue and nausea also get a white cell booster days 2 and 3. Good luck and happy new year from paris
Bonne Annee, and thanks for the tips. The cold cap is not for me so I will just wear my scarves and hats. Have just bought a lovely new cashmere bobble hat for the chilly days. xx
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