Hi finally my Mum has started Chemo. Been diagnosed as Serous Grade 3C. Next cycle planned for 3 weeks time.
She is planning to get her hair cut short. How long will it take her hair to start falling out? She is surprisingly up beat now the Chemotherapy has started. Though hair loss is upsetting for her. She reckons some of the fluid has started to disappear already THAT QUICK??? Is that possible?
It's difficult to say what to expect as we are all different..I would say cut her hair as short as possible once it starts to go...I didn't want to..but you start to find hairs everywhere..drives you mad..I ended up with the lot off...lol..she will be exhausted after each session..and have various sides affects etc..note even the smallest detail and tell them at the next visit..breathlessness is common...twiching in the legs...numb fingers and toes..bit annoying..oh! And the tabs she will be given after session can make her narky but that goes when she stops them ( 3days it was for me) but I can say..it's definetly worth it!! Lol xx all the very best
Narky? Oh my poor Dad ☹️ A nurse caught me and my sister giving him a hug the other day, she was concerned and asked if we were okay. Yes I said he needs a hug for all he has done for Mum and how much patience he has shown with her. I’ll send Dad a ‘Narky alert’ message, just to warn him. Thanks for the reply x all the best to you too x
I agree with Annette- every one is a bit different. Regarding hair mine started coming out after chemo 2 and I sheared myself!
I did find that the ascities cleared up almost immediately. There is a rhythm to it but every time you think you have cracked it another side effect may pop up because the effect is cumulative. Best of luck to you and your Mum xx
I had a very hard time on first line Chemo, although the infusion days weren’t so bad, as they give you steroids to keep allergic reactions in check and I could not sleep for days
I also had a lot of trouble eating as everything tasted horrible. My ascites lasted until my second infusion, so that also kept me from eating or drinking very much.
I had my hair cut very short before starting Chemo, but it began to thin by the end of my third week and was gone by the middle of my second month.
I was happy to lose my hair because it meant that the Chemo had reached the top of my skull and I was really anxious to destroy all the evil cancer.
Probably, my worst Chemo side effect was bone pain, which usually came on two or three days after infusion. It would start in my ankles and work it’s way up to my hips. I think it would fade every second week and just come back as routine after the next infusion.
Then there was the exhaustion. I could not walk up the stairs or do the slightest chore without breaking into a sweat, getting breathless immediately, so basically, I was bedridden for the entir treatment.
But, the cancer was destroyed!
My hair grew back, I began to walk a little each day and I was about 50% normal after 3 months, 75%if normal in 6 months, and so on.
Important to keep hydrated, to experiment with tasty food items, and to keep on top of managing digestion.
Hope this helps,
Laura
My bone pain was just the opposite...started in my jaw and went downward to my feet...same time frame...I would be so happy when it reached my toes...it meant a few days of being normal.
I have got to say, yours sounds even worse than mine. Mine ended at my hips but stayed painful from ankle to hips for those ten days.
It was bearable though, because I was sick in bed anyway.
One of the weirdest symptoms I had was feeling like my feet and ankles were locked into an ice tank.
I had to sleep with my Ugg boots on!
Hugs,
Laura
I had carbo taxol for first line treatment, whilst my hair thinned I didn't lose it completely, so if I wore a little hat I had quite fetching little wisps of hair poking out! Main issues for me were fatigue, reflux and nausea from about halfway through and low red and white blood counts, so sometimes chemo was postponed to give my blood count time to recover, I was given a few units of blood at one point. However we are all different and the important thing is to keep as positive as possible and get help from the medical team when needed. Make sure you get the direct phone number of the nurse who can support your Mum if times get tough.
I wish your Mum all the best with the treatment xx
I found keeping a diary a great help. list everything down, reflux, hair loss, mouth sores, taste sensation loss,etc. Taxols have unpredictable results on patients. Read up on them. Sometimes there are no side effects. It appears that Oncologists now try and do infusions over a longer period for better results. Also make sure your Oncologist weighs you and takes your blood pressure every visit as the dosage depends on body weight.
Thanks Ladies. We are on day three and the first day after Chemo Mum was very chirpy, next day not as good bit tired and in a little bit of discomfort, today at A&E at noon after not sleeping a wink overnight and in too much pain. Still no answers as yet as to what the cause is. Major frustration is that she rings a number she was given for a specific 24/7 Oncology number, goes in to A&E and announces her self and no one has a clue she was coming in. Anyone guess what the pain may be?
Mum has been admitted now bless her. Puking clammy low body temp of 34C they had to put her on a hot bed despite her saying she was boiling but felt cold to touch. My poor Dad has had to be home and my sister had to sit with her holding a bowl whilst she’s being sick. She’s never seen her looking so poorly. Can’t believe the difference from two days ago when she was so chirpy.
Difficult to know what to expect as we are all different and different ages. I had Carbo/taxol for first line. I was 68. My hair started falling out after two treatments and I purchased a wig and two hats. The fluid started to disappear after one treatment and after two really good. I am also Serous Grade 3C. Looking back, the hair loss wasn't the hardest part. I had pain throughout my body from the taxol...joints in particulary. Also developed neuropathy in feet and hands. I am on second line Carbo/Taxol now after 6 months NED.
Thanks. You are just a few years younger than Mum. I’m not too up with the Jargon, what does NED stand for please? Mum has only had one cycle of treatment and she is currently on her second day stay in hospital as she was in a lot of pain then given an opiad based drug which made her sick. I don’t think they agree with her at all but at a time when she is having to get calories in she was vomiting them back up I think she needed to be there where she can be kept an eye on.
I did not have that kind of pain, but I was also too ill after diagnosis that the first infusion made me so ill I had to spend a week in hospital, but that was a good thing as I received round the clock IV nutrients, vitamins and minerals and steroids, too, plus great hydration.
When I left hospital I was so much better and able to have the next infusion.
Things got slowly better with each infusion as the cancer was destroyed.
So try to keep mom in hospital. See if she can cope with just IV paracetamol.
Best wishes,
Laura
This sounds similar Laura. Mum was given laxitives but I don’t really think that was the biggest issue initially with her. Now the laxitives are the thing making her exhausted going to the loo every 10mins. Thankfully she had a visit from 2 Oncology nurses today and they got her moved to a room, and they have said laxatives are too much and have asked for a milder prescription. They are talking of moving her closer to the Oncology nurses at a closer general hospital as she is still at an A&E hospital. I’m not really filled with confidence that initially they knew what they were doing with her. And the Chemo has had a bad effect, and will have to review it.
Din’t Give up on the Chemo! You just need to figure out the right management of the side effects.
It is brutal, but if your mum can get through the first two infusions, her cancer will start shrinking and the side effects of the Chemo won’t be quite as hard to bear.
She just needs to be stabilised with IV fluids, and the right anti- nausea meds.
I had trouble getting all that together in the beginning but discovered the mild anti nausea medication, Cyclizine and I could take it several times a day.
I would start my morning with 1 Ondansetron and 1 Omeprozole, then wait an hour before eating or taking meds.
If I felt queasy, I would take a Cyclizine and sometimes even another Omeprozole.
If I thought the Ondansetron was making me constipated, would take 1 Docusate Sodium, only.
Don’t Give Up!
The Chemo will work!
Hugs,
Laura
I can’t give up on Chemo because it’s what is gonna keep her alive. I guess what I’m saying is that I think that if she’d maybe been seen earlier by the Oncology nurse she may have got the right meds and not suffered the humility of having soiled herself because she couldn’t physically get to the loo in time.
Oh yes,
That is awful. We OC sufferers have to endure some terrible indignities.
Here’s hoping there will not be too many more.
Hugs,
Laura
Thank you Laura you have been so kind in giving me advice and help. Tbh I don’t know how my sister and Mum are coping without this kind of support and advice. I guess Mums got more things to cope with right now. But don’t know how my sister is doing it.
Got an update on Mum. She has been in hospital since Bank holiday Monday. She is being moved to a palliative care and put in an isolation room. Her blood count is really low right now and is putting her at too much risk of infection. They have to put her on a neutropenic diet which is apparently an eating plan for people with weakened immune systems. They said they will take her via ambulance to her next appointment on Thursday at the. So the Doctor can review what they do differently with the next cycle of Chemo. Because it’s plain as day this won’t be able to continue in the same way as the previous cycle.
Just when I thought she was beginning to improve a little the last few days.
What the hell else can happen?
This sounds like a truly rough situation.
But it seems like they are doing the best they can.
It must be so hard on you and your family to see your mother suffer so.
Hopefully, they will get her stabilised and rethink her dosage. Maybe a lower dose chemo will do the trick. Once the cancer starts being destroyed, the pain will go away, too.
Be strong,
🙏🏼
Laura
Thanks Laura I haven’t actually seen or spoken to my Mum for a while as I am miles away from her, which at times has been so frustrating. She is managing to text me a little now that she is improving and everything is under control. I know she’s in the best place for her right now.
NED=No evidence of disease. They may change her from Taxol or lower the dosage for next treatment. I had a hard time with pain with the first treatment. My message above is wrong my second line is Carbo/DOXILL. First line was Carbo/Taxol.
I felt okay day of chemo and the next day. On third day I have to go to the hospital for infusion of fluids and magnesium each time. I am in USA - just to note because things may be different in different areas.
Nervous to start Chemo :(
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Tomorrow we say goodbye to our beautiful mum...
