Forum Discussion

ShellyF's avatar
ShellyF
Member
11 years ago

Stopping Chemo

Hi, my mum 63years old is currently going through hell.  She had her first chemo on the 26th March for invasive stage 3 breast cancer and hormone positive with lymph node negative.  Mum had a lumpectomy and surgeon said they got the lot but suggested she have adjuvant therapy - chemo, radiation and then HRT.

She felt good for the first 2 days and then pain, agony, fatigue and nausea, no taste buds, sore muscles and back pain she likened it worse than labour pains that came every 10 minutes.

5th April she woke up with sore throat, temp at high 36s, by 11am her temp had risen to 37.4, couldn't swallow, couldn't eat or drink, migraine headache. I called chemo unit at the hospital and was told to stop taking her temp for 4 hours and no pain medication for that time as well.  Took her temp 3 hours later and it was 38.3.  I drove her to hospital and she was immediately admitted in emergency. By that time her temp had risen to 39.4c, and she was tacycardic 119 beats, after they took blood and urine sample and 3 hours later found out her white cell count was completely depleted and she had severe tonsilitus. The nurses kept asking about where she had been and if anyone had a flu around her.  Mum had been home bound from the Saturday after her 1st chemo because she couldn't get any energy to go out and felt so sick.  She spent 3 days in hospital with 5 lots of antibiotics, endone every 3 hours for the pain of her headache and back aches,warfarin because they thought she had a blood blockage. Then they proceeded to give her a needle in the stomach to help boost the white cell count and informed us she would have to have one after every chemo treatment.

Mum has her next chemo this Wednesday and she wants to stop it. And just have the radiaton and HRT.

My question is can she do this, because seriously I don't think she will survive the chemo.

Can anyone help or has anyone stopped chemo. 

chemotherapy
family
  • Mia1965's avatar
    Mia1965
    Member
    11 years ago

    How are you huny??? I had my BC in 2011 and finished chemo and radiotherapy in 2012.

    Firstly let me just say what a wonderful daughter you are looking out for your Mum in this way!!! It must be so hard for you to watch what she is going through, but to stop the chemo??? A lady I met during my hospital stay after my operation to remove my tumor had chemo before me. She had a massive Asthma attack during her first chemo and had to stop all together! So you see she had no choice with it from then on, she had to stop but didn't want to. But she had to accept it!!! Yes your Mum is having a very hard time. we all go through similar dramas to some degree with chemo and other cancer treatments. It is only when you talk on this forum that you realise just how common it really is!!! I would liken my journey to your mum's somewhat. I ended up in emergency a couple of times due to infection and blindness issues which I later found out was due to the anti-nausea drug pre-chemo.I also have an autoimmune disease which played havoc with my treatment because I had difficulties with the Prednisone i was taking with it's own side effects and issues. my doctor told me I would be a bigger challenge because of this, and obviously I was! LOL!  I was hospitalised for three days on the extreme bout I had. I had to have a shot with every chemo to boost my white blood cell count too!!! The cycle never seemed to end. PICC line, blood clots, daily Clexane injections, blood tests and constant nausea!!!  It is frustrating for everyone concerned but especially the cancer patient!!! Somedays my family could not bare to be around me due to being so irritable and angry at the world for giving me such a crap existence!!! Also due to the nature of the drugs I was taking. I even told the doctor after my first chemo, at my first oncology appointment 10 days later to shove it you know where!!! It caused a lot of problems for my hubby and myself and we had a massive arguement before I went to the hospital that very day!!! The doctor and my husband was shocked I must say!!! The doctor asked me why? I told her that I was still feeling like crap and that I should be feeling much better and obviously something was very wrong that I wasn't!!! Of course when I was told if I did not have the treatment according to the plan, then the first dose was for nothing!!! I needed to have the series of treatments in specific doses and it was only when I had the last chemo, that I was actually at the full dose that was going to save my life in the long run!!! This is why they break the doses up like in radiotherapy. you could not stand the full treatment in one hit, even though it is hard at any stage of course. You just have to support your mum and give her the understanding she deserves and needs huny:) Having the chemo increased my chance of survival from 75% for 10 years minimun to 85%. So it can benefit your Mum greatly by doing this now.  Tell your Mum to stay strong and focus on the positives and the bigger picture. Your Mum is a very brave lady and will get through this with your help. I am in my third year of remission now so if I can do this so can your mum!!! Take care of yourself and your Mum Shelly and she will win not only the battle but the war!!! XXX MIa. XXX :)

  • Mia1965's avatar
    Mia1965
    Member
    11 years ago

    How are you huny??? I had my BC in 2011 and finished chemo and radiotherapy in 2012.

    Firstly let me just say what a wonderful daughter you are looking out for your Mum in this way!!! It must be so hard for you to watch what she is going through, but to stop the chemo??? A lady I met during my hospital stay after my operation to remove my tumor had chemo before me. She had a massive Asthma attack during her first chemo and had to stop all together! So you see she had no choice with it from then on, she had to stop but didn't want to. But she had to accept it!!! Yes your Mum is having a very hard time. we all go through similar dramas to some degree with chemo and other cancer treatments. It is only when you talk on this forum that you realise just how common it really is!!! I would liken my journey to your mum's somewhat. I ended up in emergency a couple of times due to infection and blindness issues which I later found out was due to the anti-nausea drug pre-chemo.I also have an autoimmune disease which played havoc with my treatment because I had difficulties with the Prednisone i was taking with it's own side effects and issues. my doctor told me I would be a bigger challenge because of this, and obviously I was! LOL!  I was hospitalised for three days on the extreme bout I had. I had to have a shot with every chemo to boost my white blood cell count too!!! The cycle never seemed to end. PICC line, blood clots, daily Clexane injections, blood tests and constant nausea!!!  It is frustrating for everyone concerned but especially the cancer patient!!! Somedays my family could not bare to be around me due to being so irritable and angry at the world for giving me such a crap existence!!! Also due to the nature of the drugs I was taking. I even told the doctor after my first chemo, at my first oncology appointment 10 days later to shove it you know where!!! It caused a lot of problems for my hubby and myself and we had a massive arguement before I went to the hospital that very day!!! The doctor and my husband was shocked I must say!!! The doctor asked me why? I told her that I was still feeling like crap and that I should be feeling much better and obviously something was very wrong that I wasn't!!! Of course when I was told if I did not have the treatment according to the plan, then the first dose was for nothing!!! I needed to have the series of treatments in specific doses and it was only when I had the last chemo, that I was actually at the full dose that was going to save my life in the long run!!! This is why they break the doses up like in radiotherapy. you could not stand the full treatment in one hit, even though it is hard at any stage of course. You just have to support your mum and give her the understanding she deserves and needs huny:) Having the chemo increased my chance of survival from 75% for 10 years minimun to 85%. So it can benefit your Mum greatly by doing this now.  Tell your Mum to stay strong and focus on the positives and the bigger picture. Your Mum is a very brave lady and will get through this with your help. I am in my third year of remission now so if I can do this so can your mum!!! Take care of yourself and your Mum Shelly and she will win not only the battle but the war!!! XXX MIa. XXX :)

  • Deanne's avatar
    Deanne
    Member
    11 years ago
    I am so sorry for you and your Mum are having to go through this. The oncologist should be able to give you information about how important chemo may be to your Mum's chance of staying cancer-free. They can give you the statistics for people who have similar pathology to your Mum. As the other ladies have said it was just bad luck that your Mum got an infection. I was hospitalized for 3 days with an infection and neutropenia during my chemo last year. After that I had the Nuelasta injection 24 hrs after each chemo and I did not have any more problems. Feeling so sick will definitely affect your mood. Also the drugs they give you with the chemo can also affect your mood. It may not seem like it but chemo does only last for a short while and the long term benefits for me made it worthwhile. It is the toughest thing I have ever had to do but I am well now and have a much better chance of staying well because of the chemo. There are medications that can help with just about all the side effects. The oncologist should be able to advise and give you scripts for what your Mum may need. I had medication for diahorea, constipation, oral thrush, nausea, heartburn, sore eyes and pain. I did not always need them but knew they were there if needed. Using Biotene mouthwash and toothpaste can help your mouth. Manuka honey sooths the throat. Hygiene is critical, I washed my hands constantly and had frequent showers. I made sure everyone around me washed their hands too and kept hand sanitizer in my bag for when I went out and had to touch things like door handles, trolley handles etc. Talk with the oncologist and get all the help you can. Use this network to keep in touch with others who have been through this too. My daughter was my main support when I went through chemo. I could not have done it without her. I will never be able to do enough to thank her for what wonderful support she gave me. Thinking of you and wishing you and your Mum all the best. Take care. Deanne xxxx
  • jenpen's avatar
    jenpen
    Member
    11 years ago

    Hi Shelly

    Such a scary situation for you...and your Mum!

    I can relate to what your Mum is going through...although the poor woman is suffering alot more with the chemo than what I had to!

    I finished my chemo in Jan this year after lumpectomy & subsequent mastectomy....now on hormone therapy (tamoxifen).

    Check out my previous blogs if you like but in a nutshell, I had a few hospital stays caused by low blood cell count (from infection) during chemo. After each subsequent chemo I had to administer Neulasta which resulted in me not having any further problems with the treatment.

    As Robyn said, it is just bad luck your Mum contracted tonsilitis....and she will hopefully sail through her future chemo sessions! As for your Mums mood, this had the biggest effect on me! My mind was in a bad way....I have 2 children & going through chemo during Xmas school holidays was dreadful for us all. 

    With your support & keeping the oncologist informed of her side effects I'm sure your Mum will get through it. 

    Sending you good wishes & positive thoughts, Jen x

  • yetbeung's avatar
    yetbeung
    Member
    11 years ago

    The needle you mentioned to boost the white blood cells, I had that after every chemo also, and it gave me horrendous bone pain - honestly it felt like every bone in my body was broken. I was taking 2x Endone and 2x Panadol every 4 hours just to be able to get out of bed. The pain would start on usually day 2 after the injection and last til about day 5 or so. Thankfully I was given a heads up about the bone pain, not everyone gets it, but I was unfortunate enough to get it every time. 

    I didn't get as bad side effects as your mum, but I did have some ie. very unpredictable bowel - I felt trapped in the house sometimes...I  was given a 24hr number to get a hold of my oncologist, she was amazing and told me to call her at ANY time if there was anything that I was worried about. I called her a few times throughout my treatment (I had the last of 8 doses of chemo on 18th March)  and usually the way to fix almost all side effects is to either tweak the "cocktail" of chemo, or to prescribe some other medication to take home ie. painkillers, anti nausea, laxative / anti-constipation drugs.  As an example, I was told that if the tingling / numbness in my feet got any worse, we could do a slightly lower dose of chemo, and have it over 9 doses instead of 8. Maybe a tweaking of the drugs is all that your mum needs. I felt that I was living on tablets, but once we got the routine down and figured out what I needed, it was quite doable and nowhere near as bad as it could have been.

    I agree with Robyn, your mum's infection was probably the cause of a lot of her troubles, not the chemo. The short temper & being irrational could be brought on out of frustration at feeling so lousy!

    Of course it is the patient's right to accept, refuse or stop any treatment at any time, however I would at least discuss it at length with the oncologist and try anything they suggest (as in a change of drugs to have at home) before requesting to stop treatment. Keep in mind that a lot of ladies have been through the chemo before so the oncologist would have seen the side effects and know how to deal with it.

    Best of luck with it, hopefully they can sort it out for your mum. xox

  • ShellyF's avatar
    ShellyF
    Member
    11 years ago

    Thank you Robyn W, I am just worried that I have never seen Mum in so much pain in all my life, she's the rock in our family and has always been healthy, nothing ever keeps her down.  And to see her in so much pain and crying, which she rarely does in front of anyone is heartbreaking. Her hair has started falling out and she has no concentration whatsoever.  And she keeps repeating herself, 5 to 6 times a day on the same subject.  I live with Mum since her diagnosis to offer support and she is just so short tempered and irrational,  Is this normal, I have no idea.  Thank you so much for replying so quickly.  I hope everything is going well for you. x Shelly

  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago
    Shelley,what a terrible experience for you and your Mum.I am 59 and had chemo last year.A lot of ladies on here have had their white cell count drop,and have been hospitalised on antibiotics.I would like to suggest,if your Mum doesn't mind,that she NOT stop her chemo without talking to her oncologist first.ALSO,I think you will find,that most of her feeling so dreadful,was because of the infection that she picked up,and not from the chemo.Now that she will be having the injection each round,she should avoid that problem again.The first round is always the toughest,because you don't know what to expect,and it was just pure bad luck that your Mum picked up an infection.The injection that they are talking about for your Mum is very common.I hope that some other ladies with experience of infection and hospitalisation will come on here and offer their advice to you and your Mum.Try to remember,that chemo is given for a good reason,and there are plenty of medications to stop the side effects of it.Hopefully your Mum will be a whole lot better the second round.Take care xoxRobyn