Struggling a lot with side effects

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Hi

I was diagnosed with ER8 HER2 negative invasive ductal breast cancer with low volume bone metastases in June 2022.

I am currently on Zoladex injections every 3 months (from 22nd July)

Abemacaclib 150mg bid (from 1st August)

Letrozole 2.5mg sid (from 19th August)

Denosumab sc every 4 weeks (from 23rd Sept)

Accrete 400iu vit d and 600mg  Ca sid (from 28 sept).

I also have just one kidney (congenital). My blood results have generally been good with wbcc,  neuts,  hgb, plt all being normal or low end of the normal range. My crea did elevate to 140 but I was told this can happen with Abemacaclib and doesn't reflect kidney function.

My main issue is an extremely dry mouth/relentless feeling of thirst. This started around 2 days after Denosumab injection (my vit d and calcium levels were normal). And extreme tiredness. I went to my gp who found blood in my urine from a dipstick test but no bacteria was cultured. A few days later I had a blood test as my symptoms worsened, they were OK but I had drank around 9-10 pints of water the day before the blood test.I have tried attaching my results from this test. Last night my mouth was so dry it stopped me sleeping. My night sweats have worsened since the Denosumab too. My tiredness is so extreme that I can sleep 10- 11hours at night and still need a 1-2 hour nap in the morning and afternoon the following day. I can't hold a conversation for more than 10 minutes so it's impossible to communicate with friends and family. My temperature has been normal throughout. The only other sign has been blood tinged shots from my nose which started in September. 

I have tried contacting my oncology ward and gp but don't seem to be getting anywhere. What can I do to help my dry mouth. I have tried sips water (now limited to 2-3L a day), boiled sweets and chewing sugar free gum, which only helps slightly.

Any tips or advice would be gratefully received.

Thanks

  • Hi Hol,

    Welcome to the online community. My name is Penelope and I am one of the Cancer Information Nurse Specialists.

    I am sorry to hear that you are struggling a lot with side effects from your treatment. Coping with symptoms such as a dry mouth, fatigue and night sweats must be very challenging.

    With any new, changing, or worsening symptoms such as the dry mouth and extreme fatigue you mentioned we would suggest speaking to your GP again, hospital team or 111 today. This ensures that your symptoms can be assessed on an individual basis and monitored or treated as necessary.

    You said that you don’t feel that you are getting anywhere when you contact the GP or the oncology ward. This must be very frustrating. It can sometimes take a number of appointments raising the same concerns for a GP to get a clear picture of the situation. Keeping a record of any symptoms and the impact on your day to day life may be helpful when speaking to the health care professionals about your concerns.

    If you have a breast care nurse or clinical nurse specialist then they and your oncology consultant need to know about these symptoms and the impact that it is having on your quality of life.

    Sometimes side effects can be more problematic soon after starting a treatment. If side effects remain a problem, however, then your doctor may suggest taking a different type of medication.

    This information on mouth problems has a section of tips for a dry mouth including avoiding alcohol, using a water spray or other spays and gels that are available on prescription.

    You may also find this information helpful on menopausal symptoms and breast cancer including tips on management of fatigue and hot flushes.

    Fatigue can be a hugely debilitating side effect of cancer and its treatment. It sounds like this is impacting on your day to day life and social contact with family and friends. As above please do raise these concerns with your GP and hospital team for advice and support.

    Coping with treatment can be difficult and you may find it helpful to look at the other support from Macmillan, such as  our online community or free specialist counselling.

    Best wishes,

    Penelope, Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

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