Recently diagnosed - low immune system

Diagnosed with breast cancer Triple negative and inflammatory breast cancer
1

Hello,

I’m new here and new to forums in general. Just looking for advice or to hear from other people with similar diagnoses.

 

Background:

Long family history of breast cancer. Mum, Aunt, Grandma, Grandaunt + more

Most of which passed away due to side effects of treatment not the Ca itself

 

History of fibroadenomas

 

Diagnosed 16 April 2019 with 13mm Grade 2 TNBC IDC in auxiliary tail, has not spread to lymphnodes.

CT clear

Bone scan clear

MRI found no additional tumours

ECG clear

 

Was due to start chemo 23rd May but my Neutophils (infection fighting cells) level was too low. 0.8 instead of the normal range of 2.0. They won’t start chemo if less than 1.0.

 

All blood tests have come back clear for any underlying issues, so now I have to decide what treatment I want. Having chemo with an already weakened immune system seems like a very bad idea to me. They have offered me GCSF injections to boost my WBC - but that is going to put my body under more strain.

 

The thought of having chemo makes me so anxious as I have seen too many family members go through it. The toxicity, the chance of heart, liver and kidney problems, infertility, early menopause and all the other negative side effects are making me not want to do it.

 

The chemo regime they have recommended is an accelerated dose dense regimen

AC (Doxorubicin & Cyclophosphamide) bi-weekly for 3 months 

Paclitaxel  and Carboplatin weekly for 3 months

Then Surgery

Then RT

 

I have tried to discuss integrated therapies, holistic therapies even homeopathic and natural therapies but medical team not interested. I asked if I could try immunotherapy - which has shown good evidence for TNBC in clinical trials but I’m not eligible for study. Mistletoe therapy and IV Vit C were not things they were aware of.

 

I want to prepare my body as best as possible to try to limit the negative effects of the chemo if I have to have it. I’ve read a couple of posts on here from people with TNBC who weren’t advised to have chemo so would be very interested to hear from you.

 

Are there any other therapies either integrated or otherwise that have evidence to show they work for TNBC patients?

 

I am very active, am due to move house in the next 6 weeks and have 2 toddlers with no additional childcare support (Grandparents not around), all other relatives working age so at work all day. Kids at nursery 3 days p/w - can’t afford to put them in for more days.

 

I’ve already cut out sugar and trying to eat alkaline.

 

If you’ve read this far - thank you

2

Hi 5thGenerationBC

so sorry to hear your story, it must be so challenging for you!

I hope one of the nurses may come back to you on some of your questions and give you advice from a medical point of view.

Most of us, on the forum, are lay people and can only share our own experiences and knowledge we gained over our time of diagnosis, treatment and recovery.

Glad to read that nothing seems to have spread, that is always good news.

 

Having done a little research, it appears that a low level of neutrophils can apparently happen from time to time and it is recommended to have another blood test a few days later to confirm, whether it is a more permanent state of affairs.

 

Perhaps the key to getting yourself ready for chemo is a well balanced diet of plenty of vegetables, fruits and also including dairy, fish and some meat. Meat is very nutrient dense. Perhaps ensure you have the recommended daily amounts of all vitamins, minerals, trace elements, etc. your body requires.

 

I have heard of some of the alternative treatments you mention in your post. I have explored some of them for myself, as they are relatively unknown and unsupported by the medical profession here in the UK.

Evidence that these treatments work are extremely sketchy, to say the least, and the published research proving it may work, is heavily tainted and not based on a truly correct scientific basis. I rather trusted my treatment team to find the right route for me. 

Yes, it was not easy and yes it feels completely counterproductive to ‘poison’ more of your body than you might absolutely have to - to get better. Today I am fit and healthy (2.5 years post treatment) and lead a normal life.

I chose to trust in the recommended treatment, as my family would have never forgiven me (nor me myself), if I would have used an unproven course of action, only for the cancer to become worse and non treatable.

 

Every cancer is very individual, as is our reaction to the relative treatment we are being advised to have. It might well be that you can tolerate the treatment suggested to you, by your treatment team, very well! 

The chance to develop heart, liver and kidney problems will much depend on your general health and fitness and the type of chemotherapy, which is being administered and the accompanying drugs, which you’d be given. Hence this is something you really should discuss with your treatment team, as they can advise you best.

I had GCSF injections throughout my chemo and it made a huge difference. It really helps the body to recover much quicker and I would thoroughly recommend having them!

 

There are no easy options and your experience with other family members must make things so much more difficult for you. It is worth remembering that treatments for cancer are advancing and changing at a great pace with success rates proven to continually rise.

 

Please trust your treatment team! No one wants you to go through anymore distress, than absolutely necessary. The support from all who are involved with your treatment is usually tremendous. If you have a Breast Care Nurse assigned to you, please take time to discuss all your thoughts with her/him, as he/she can help a lot, whilst you are going through this.

 

Hugs Sue H-S

3

I can’t really add much more to the excellent advice given by Sue but would certainly back up her comments about trusting your medical team to find the best regime for you and eating sensibly and healthily. I had chemo in 2015/6 and made sure I ate a really healthy diet throughout. I coped pretty well with few problems and I would do it again if I had to.

 

The NHS would not invest so many resources into trying to treat us all if the likely outcome was not good. 

 

Stick around this forum for excellent support and advice. The helpline is very helpful if you want to speak to a professional not related to your treatment team.

 

Sending you best wishes.

 

Ruth xx

4

Hi, it appears that you have been given sound and well informed advice from Sue. I’m very sorry that everything is so overwhelming for you at the moment, but with expert advice and tailored treatment I am sure that, like me, you will get through this. Your team will do everything in their power to help you, and your success is their success. It’s not that they aren’t interested in natural remedies, it’s that there is no proof that they work, like Sue says. It is over two years since I was diagnosed, and in that time I have had many incidents of low neutrophils. In fact, the term used is crashed, not just low. The body does recover, normally, and I had weekly bloods to check my neuts. My lowest count was .05! I have had gsf injections to help the bone marrow produce neutrophils, which worked admirably. GSF injections are given routinely anyway when you have chemo, so nothing to worry about. The whole body is put under stress with chemo and rads, and you can help by eating as healthily as possible, and making sure you exercise and sleep well. There is some evidence that fasting can help minimise side effects of chemo , and although I didn’t fast I did do a liquid only diet for 48 hours before chemo which I felt helped. Plenty of nourishing soups and smoothies made from fresh, wholesome foods.

i can well imagine that your family history has had a great impact on you, but today breast  cancer is with a small c, not the Ciller it used to be. I’m a 72, overweight granny, and I can assure you that conventional treatments, although not a walk in the park, are doable. I think the only thing to fear, is fear itself. Take a leap of faith. Good luck. X