Marie - October 2019

Hello lovely peeps!

I have just finished my last chemotherapy 2 days ago (6 cycles) and thought I would share some insights with the community based on my experience so far - while the steroids are still working at keeping me on my feet! rofl

I don't use the forums much, so apologies if I'm repeating things that have been said before or elsewhere, or that you all know about anyway, but I want to share my personal experience to date as it might be of some help to others who are starting down the same treatment path.

IMPORTANT! - Please double check with your oncologist/nurses/surgeon first before following any of my suggestions below. 

THE FACTS: Cancer care can be a postcode lottery. The NHS is under great pressure from a lack of staff and resources. As cancer patients we need all the help we can get to make it through the various stages of treatment. Taking charge of some aspects of the treatment yourself can really help towards the best chance of survival and recovery whilst also, most importantly, making the whole process a little easier and kinder on the body and mind. 

1. TEETH. As soon as you are diagnosed with stage 3 breast cancer, and regardless of any breast operations that may follow quickly afterwards, get a dental appointment sorted ASAP to get your teeth on track, especially if you might need extractions. This is critical because some of the (taxane) drugs you may be given down the line will affect how your teeth can subsequently be treated for up to 5 years afterwards. I didn’t realise how critical this issue was at the beginning (information overload!) and it caused me some problems just before my chemotherapy was due to start.

2. DIET. Pay great attention to your diet. Nutrition is a very badly neglected area in mainstream medicine. We are all of us only alive because we have to feed ourselves regularly. What you put into your gut supplies and fuels your whole body keeping your entire system working, including, MOST IMPORTANTLY, your immune system. Your gut is a whole bio system in its own right. Avoid too much sugar and eat lots of fresh vegetables and fruits. I could write a whole chapter about this! Seek nutritional advice as soon as you can. Start eating healthy right now! I cannot emphasises enough the importance of this for helping you through the whole treatment process.

3. ANTI-SICKNESS. I avoided taking any of the regular anti-sickness drugs you are prescribed to take home with you when you start your FEC chemotherapy sessions. The drug that seems to be most commonly prescribed for this is Metoclopramide. Like most drugs it can have side effects. Chemotherapy drugs are very harsh. I figured the last thing my body needed was trying to cope with even more drugs on top the chemo. Instead I made up fresh root ginger solution to drink. This is simply a small chunk of fresh root ginger chopped up and boiled up in water for about 10 minutes, strained into a container and allowed to cool (although you can drink it warm too). A few mouthfuls of this every time I started to feel sick and it immediately did the trick. The ginger solution will keep fresh in the fridge for a couple of days, but keep making up new batches as and when necessary. It’s kind and gentle on the stomach and no nasty drug side effects!  Win-win.

My oncologist approved! ‘Google’ to find out how to make it.

4. HELPING TO HEAL AFTER BREAST OPERATIONS. I had a full mastectomy and a subsequent lymph node operation a few weeks later. The mastectomy was a doddle because I was very lucky and had a superb NHS surgeon. However, the lymph node operation had a few complications, simply because the drain tube you are fitted with to drain the lymph fluid had been tugged out of it’s hole a bit (probably by me, but not on purpose!). This meant that it didn’t drain as well as it should have done and one of the sutures came away and left a hole where the skin should have been stitched together. To compensate for this, and because it is difficult to get district nurses to come out and regularly dress wounds where I live, I started applying a little bit of RAW COMB HONEY to the open wound (you can also use MANUKA HONEY) whenever the dressing was changed. This worked a treat. The wound healed beautifully and I avoided the unpleasantness of developing a stoma, which is exactly what might have happened if I hadn’t managed to do this myself. A local veterinary practice near me routinely applies manuka honey where necessary after operating on their animals. It is applied directly to the area where they’ve just operated, immediately before stitching up the wound. Maybe we should employ some vets in the NHS to teach our mainstream medicine surgeons a new trick or two?!  Again, it’s a natural product with no side effects, not a harsh drug or a chemical cream.

5. LOSING TOE AND FINGER NAILS. The ’T’ part of your FEC-T chemotherapy treatment will come after you have complete the ‘FEC’ sessions. This is where a taxane chemotherapy drug is given, in my case Docetaxel. Docetaxel has often been described as the ‘mother of all chemotherapies’. It is harsh. It kills bone cells. This is done to try and make sure that any cancer cells at this level are completely annihilated, so that’s fair enough. 

Unfortunately, one of the common side affects of this drug can be loss of toe and finger nails. I didn’t discover until after my first Docetaxel cycle, and just before my second, that there is a medically trialled product available called Polybalm which can help prevent nail loss. I was very annoyed about this. Why? Even though it was an official double-blind medical trial conducted at Bedford Hospital over a period of 2 years (2017-2018) and that all patients using the Polybalm, apart from one, had no nail loss whatsoever, you will NOT be informed via ‘official’ medical channels that this product is available to help with this nasty side effect. 

The reason you won’t be told up front? Polybalm is classified as a ‘cosmetic’ not a ‘drug’ or ‘medicine’, therefore NICE (National Institute for Clinical Excellence) are not obliged to mention or recommend its use to those who might benefit, even though it was proven in an official trial with very successful results. Insane? Well I think so! You can buy Polybalm online. It’s not cheap at £39. You get two vials very similar to mascara applicators. One vial for your toes, second vial to be used for fingers (helps avoid any infection cross-contamination between fingers and toes). It’s a wax like substance and you use the mascara-type stick with a sponge applicator on the end (as opposed to a brush) to help apply it to your nails. Google ‘polybalm’ to find out more information.

6. RASHES. I was very lucky and didn’t experience too many skin rashes. When I did, my number one go-to solution was always pure Aloe Vera gel as opposed to any of the medically prescribed creams. This great product has so many uses and is non-chemical, totally natural and kind and gentle on the skin. I personally used it to help my skin heal faster after the breast operations. 

Where the Aloe Vera gel really came into play was after my first cycle of Docetaxel. I very quickly developed a nasty groin rash within 2 days as a side effect from this drug. It consisted of a lot of raised bumps in the groin area and around the anus which were very itchy and uncomfortable. Showering and then applying Aloe Vera gel to the affected area immediately stopped the itching and soothed everything down. This would last for a few hours when the itching would start again and I just repeated the process. This particular side effect lasted for about 7-10 days after each chemo session before disappearing, but the Aloe Vera gel was definitely my life saver in dealing with it. When I told my oncologist and chemo nurses about the rash I was met with silence, so I just carried on using the Aloe Vera gel. It worked extremely well for me, so why bother trying to find anything else? I wasn’t given a choice on how to deal with with this problem because no one I asked who was medically qualified had any alternative suggestions to make whatsoever.

7. VITAMIN D - Before I swopped oncologists and hospitals (prior to my chemotherapy starting) I had already attended a pre-chemo appointment session with the chemotherapy nurses at the hospital where my planned chemotherapy was originally booked to take place.

It appears that there are different approaches to the chemotherapy process depending which hospital you attend, and I'm guessing this scenario replicates itself around the country. At this particular hospital they test the bloods of all patients who will be attending for chemotherapy for Vitamin D deficiency. If you are deficient you will take a Vitamin D supplement for the duration of the chemotherapy plan.

My blood test showed I was Vitamin D deficient. Apparently a lot of people are. No reason was given as to why they test for this vitamin deficiency, not because of any oversight on the part of the staff, just that appointment time is limited and you only manage to think about the questions you should have asked after the event! 

Needless to say I took the Vitamin D deficiency bit on board when I went over to my new hospital. I told new oncologist I'd been tested for deficiency by the previous hospital and they recommended supplements. He said that was fine and also confirmed to me something that I had discovered in the interim - that only Vitamin D3 in liquid form is any good. Don't think the tablets get absorbed as efficiently.   

Since then I've only just got round to looking why the previous chemo department were recommending vitamin D supplements when the new hospital didn't even have it anywhere near their radar.

As usual there is lots of argy-bargy on the web and arguments about Vitamin D and cancer rage back and forth, but here's just one website link (American) that gives an insight into what gets them all worked up.

Chemotherapy drugs often reduce Vitamin D levels

I have no intention of asserting that the information in the link above is good or bad, it's just one of many you could look at that give a quick insight into the vitamin D issue, but all I will say is that at hospital I attended previously it was a routine test for vitamin D deficiency in every breast cancer patient with recommended vitamin D supplements going forward into chemo. Worth taking note, don't you think? They are just local, ordinary mainstream NHS hospital at the end of the day, not some quack establishment operating out of basement! 

Medical staff were obviously convinced at the previous hospital about the benefits of Vitamin D, enough to test everyone coming in for chemo and recommending supplements if you were low! It's not in the NICE guidelines to do this, so very interesting as to why. Maybe it is down to one or two oncologists making their maverick mark, perhaps? Good on them, I say!

Guess I have been extremely lucky to have gone through the previous hospital system first. It made me aware of the Vitamin D issue. They certainly don't mention or consider it at my current hospital. It has probably helped me enormously in surviving the chemo as well as my long term prognosis, purely because I noted what the nurses had said at the previous hospital, took the information with me and started to take liquid Vitamin D3 daily supplement straight away. I have taken it religiously every day since.  

I won't ever stop taking it now either! 

You can easily ask your GP or the hospital to get your bloods tested for Vitamin D deficiency. In my humble opinion you've got nothing to lose and everything to gain.

__________________________

I have lots more suggestions and ideas in the pipeline, but think this first post is more than enough for anyone to start with! There is far too much information overload at the point when we are all first told about our initial cancer diagnosis anyway. I hope my post hasn't added too much confusion to the general state of play where cancer treatment is concerned...

If I'm on track with my 'chemotherapy cycles' so far then I know I will be hitting the deck with fatigue in a few more hours once the steroids have worked out of my system. Therefore please don't expect me to respond straight away to any possible questions just yet as I probably won't be checking back in again for a another week or so when I have recovered a little from this from this last chemo.

But I really hope some of my tips above can make a difference to those who are just about to start the same journey and who might come up against the same problems.