Advanced Prostate Cancer - recent 2015 Stampede Trials

History:

My name is Ian. I am 63 yr old, and currently enjoying my first year in retirement.

I was diagnosed with prostate cancer in December 2007, and told that my P.C. was an aggressive strain and my cancer was in the process of actively breaking out of the ‘prostate capsule’ into the surrounding pelvic tissue (by approximately 1cm). In January 2008, I underwent keyhole surgery at QEHB Birmingham, and having made a good recovery, I returned to desk-based office work inside 4-5 weeks. However, by Jan’ 2008, my PSA had started to climb again, from its initial 0.05 value post-surgery, to 0.2 by Jan 2009, whereby a decision was taken to place me on a 4-week, high-dosage, local-beam radiotherapy package to curtail my escalating PSA.  I completed this without issue, albeit the treatment left me feeling fatigued for about 5 - 6 months (* I considered this to be a small price to pay to arrest further gains in my PSA).   
My PSA then remained relatively stable, rising incrementally over the next 7 years, allowing me to continue full-time employment. However, by mid-2016, my PSA inexplicably rose from 3.6 to 6.4 within a 12-month period, suggesting the disease was actively spreading. I had a whole-body PETscan that quickly established that my cancer had migrated to 2 pelvic lymph nodes. I was then given a short course of localised radiotherapy (SABR system) on these two sites. A subsequent PETscan showed a measurable size reduction to the 2 new metastases, but also highlighted to a further (3rd ) lymph metastasis site, and of greater significance, a 4th metastasis on D7 disc of my spine. With this new development I was immediately placed on new treatment package using a combination of the hormone suppressant Zoladex, and the chemotherapy drug Docetaxel (NICE approved, a bilateral approach developed under the Stampede Trials, of 2015). I am now on Week 16 of my 18-week treatment, and overall, I appear to be coping well with the invasive impact of the chemicals involved.

Impacted on my body?   I will now summarise the impact that this recent treatment has had on my body. I should add …everyone is different, and the impact this hormone + chemo’ combination has had on my body may prove totally different for someone else. The outcome and side effects of this treatment regime will clearly depend on a range personal factors which include age, physical health & fitness, mental health, and the individual’s ability remain mentally focused on the end game in this treatment.   During the 18 week treatment I have been taking the following medication:

(1) A 4-week course of Cyproterone 100mg (‘prep medication’ in readiness for my main chemo run).
(2) Zoladex: A 1-off (28-day strength) injection of Zoladex, followed by subsequent 3-monthly injections of this testosterone-suppressant hormone, injected into the lower abdominal fatty issue, below the waistband. Yes, rather unpleasant, but it is a short-lived experience, and it’s very effective! Within 8 weeks of starting this hormone, and 2 cycles of chemo, my PSA had dropped from its elevated mid-2016 elevated peak of 6.8 to a very satisfying 0.02, suggesting that my metastatic cancers had apparently...“stopped feeding”/ stopped giving off …’prostate specific antigens into the blood’! It was great news.
(3) 3-weekly infusions of Docetaxel chemo, delivered intravenously via cannula at the wrist. This is a totally painless experience, executed by fantastic, overworked, underpaid but greatly valued NHS nurses…. Xxx!!!  Chemotherapy is most effective at killing cells that are rapidly dividing.  Unfortunately, chemotherapy itself does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur.  The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhoea, and/or hair loss.
(4) Prednisolone 5mg steroid tablets, designed to offset the impact of the chemo on the body, making easier to deal with the treatment. Taken twice daily (9am & 3-4pm daily), * without fail *.  (Note - read the medication details leaflet which is supplied with the tablets -especially the ‘ side effects’ script, as this tablet, like every medication, has several potential side-effects, which you may or may not experience. In my own case I was made aware of the potential for this drug to impact on internal eye pressure. As I live with glaucoma, I now undertake 3 weekly checks on my eyes to ensure that the glaucoma remains under control, at least until I come off the Prednisolone - a manageable side effect.
(5) A course of Demamethasone tablets, for taking on the day prior to each chemo session.
(6) A course of Domperidone tablets (to combat nausea, as /when required) - not used yet.
(7) A course of Ondanestron tablets, for nausea issues, as/when required - not used yet.
All 5 of my intended 6 infusion sessions have gone very smoothly, and I have been extremely impressed with their delivery. I am also sincerely grateful to my Chemo team at the QEBH, who work long hours to achieve a splendid service to a large group of people who are all in my situation. I now have one more infusion planned for mid-June, which will then bring me to the end of my current treatment package, and I then look forward to a period of recuperation whilst QE monitor the behaviour of my cancer in the months ahead.
In an attempt to allay anyone’s fears of undertaking such a treatment package, I will now try to list the various side effects associated with my treatment, and their overall impact on the body, particularly the Docextaxel chemo’ component.

1. Fatigue: Yes, I felt fatigue and tiredness throughout this treatment. It follows each infusion, usually kicking in Day 2-post infusion. On Day 1 following my first chemo session, my head received an uncomfortable flush of heat to the face, scalp and neck. This process repeated itself after each chemo infusion. This invariably dissipated by Day 3. In my case, during Cycles 1 + 2, my fatigue lasted 5 - 6 days, but by Cycle 3, it went on for 12 -14 days, as I rather foolishly resisted my body’s need for rest for several days. This was a big mistake. It simply compounded my body’s attempt to recover from this chemical attack, delaying my return to semi-normality by the end of the 3-week phase for each ‘Cycle’. I now realise how utterly stupid I was, and very naive in thinking I could push myself past my body’s clear need for rest. By Cycle 4 + 5, the fatigue was quite significant, necessitating 2-3 daytime daily - (10:30-12:00, plus 14:00 - 15:30 sleep, and sometimes another at 17:00 - 18:30).   I am now coming to the end of my 18-week treatment. I believe that the need to respect the onset of fatigue is paramount, and anyone involved in this type of treatment would be well advised to take plenty of regular bed rest. However, the consequence of having taken daytime rest is that I also endure nocturnal sleep interruption, which again can be frustrating. I have tended to use of my I-phone together with headphones if I can’t sleep, as this alleviates the boredom of lying awake! I regularly wake 3 - 4 times each night, but as my dear wife moved into the spare bedroom at the star of this treatment package to give me peace to manage my restlessness.
2. Muscle, bone and joint pain: Yes, I have endured a fair share of limb, joint and muscle pain, referred to as (1) myalgias & (2) arthralgias, over the last 16 weeks, but this issue diminished, and became increasingly manageable as Cycles 4, 5 & 6 progressed. However, you can, of course, manage this pain by taking paracetemol - but I elected not to do so.
3. Hair loss: I had prepared myself for the prospect of loosing my hair. Hwever, t still came as something of a shock, having previously retained a thick crop of dark hair in to my 63rd birthday! The initial indication that my scalp was changing came 9-10 days after my first chemo session, with the onset of acute pinpricking in the scalp follicles (I now know they were reacting to the Docetaxel). On researching online, I quickly realised this was quite normal, and simply an indication of what was coming down the line: the start of my hair loss. Various websites suggested that it would get progressively worse, and the best cure was to remove the hair to prevent it pulling against the follicles during night time pillow movement. With this in mind, I took the step of shaving away all my hair, an act that brought immediate relief: no more painful night scalp. Now I proudly wear my chemo’ badge, walking around outside with total ease … bald and smooth!   I would recommend that anyone embarking on such chemo treatment invests in a range of both outdoor & indoor headwear, e.g. (a) a broad brimmed safari-type hat to protect from the heat of the sun, and (b) for when it gets cold. Note: Even indoors, after the hair was removed, the back of my head felt the cold, so I regularly wear a hat in the house. I invested in a lightweight (100% cotton) cap (e.g. Bohemia Headwear.co.uk is an ideal option for wearing both around the house & in bed, as this cap is both thin & light and it therefore successfully removes heat away from the pillow, allowing you to achieve a successful nights’ sleep. By week 13-14 my hair was already growing back, albeit apparently white!
   Remember to keep the scalp moisturised and well protected when outside in the sunshine.
4. Constipation: This chemo package has left me with regular ‘blockages’ during the days following each infusion. The Chemo Team may recommend various ‘off the shelf’ chemical supplements that you can take to restore normal bowel movements, but I have opted to use regular fresh fruit (bananas, grapes, pineapple cubes) and this has worked successfully. I have specifically used this approach in the days leading into and after each infusion. It may not work for everyone.   I have only had one bad experience of ‘overactive bowel movement’, lasting 36 - 40 hrs, but I believe I overcompensated by eating too much fruit in the preceding days, and my system was ‘over acidified’. It recovered accordingly after 2-3 days, with no meds taken. Remember to re-hydrate after each chemo’ session, to the tune of 2-3 litres daily.
5. Sickness & Nausea: I was issued with the above listed pre-infusion anti-sickness meds for each of my chemo sessions, and these seem to have worked well for my system. I have also been issued with other meds for emergency nausea usage, but I have not needed to use them.
6. Metallic taste in mouth and loss of appetite: I experienced a metallic taste whilst eating food or drinking liquid for about 1-2 weeks post infusion. My tongue would turn white, and feel twice its normal thickness, often developing surface cracks, becoming sensitive to hot liquids and strong or sharp flavours. I found relief by eating fresh crisp cubed pineapple 3-4 times a day during the 2 weeks following infusion. This not only assisted with my constipation, but it also quelled my mouth discomfort, which eventually returned to ‘normal’ by week 2. I have also use Corsodyl® mouthwash as part of my oral hygiene, along with regular brushing with a good brand of toothpaste! * Advised not use an electric brush. I was also supplied with a months’ supply of Defflam®, a prescription only mouthwash, prescribed by my Chemo Team, for any mouth ulcers which may develop for anyone prone to dental issues.
7. Peripheral Neuropathy (* numbness in the fingers & toes) - Fortunately, I have only experienced low-level tingling in my toes & fingertips, usually when I wake up (usually if my feet / fingers have been pressed against the bed / duvet. etc.
8. Skin changes. The only significant issue I have noticed following 6 cycles of Docetaxel is an overall increase in the dryness of my skin, with significant flaking on lower legs and arms, behind the ankles and around the knees. My fingers have also been very dry, with cracking of the fingertips when I have foolishly undertaken light gardening work (despite my use of gloves!).
   I would recommend very regular application of quality hand-creams, e.g. the well-known Norwegian hand cream brand! Likewise regular application of body skin moisturiser following showers.
   Note: Websites suggests that the risk of infection is at its highest from broken skin and airborne sources during the 7-12 days post-chemo infusion.
   They also state: Routine flower & vegetable gardening is permissible using some infection precautions.  Strictly avoid an environment where mulch, hay, manure , topsoil, etc. is being "pitched" or spread.  Inhalation of environmental spores, particularly from moist, dark areas (e.g. compost piles) may lead to infection and should be completely avoided.  (Aspergillus spores that are abundant in these areas and if they are inhaled can cause serious disease in the immunosuppressed person). Gloves should be worn for contact with dirt and soil and good hand washing after the gloves are removed is essential.  If walking through areas where soil, dust and fungal spores may be found in the air cannot be avoided, wearing a mask is preferred. * Simple advice, but worth bearing in mind!
9. Nail changes: As my 4th & 5th Docetaxel infusion progressed, I noticed a gradual change in the colour of my nails, with the ends of my fingernails turning brown, and ridges developing the length of the nail. Likewise, my toenails became hard and brittle (playing hell with my socks… creating holes!). I am led to believe that these issues dissipate after the chemo has finished.
10. Fluid Retention. Yes, expect this to be a feature during your treatment. It is well documented that you need to keep yourself fully hydrated throughout each treatment cycle, especially in the 7-12 days post chemo’ infusion, as this helps to flush out the chemical ‘nasties’ from the body, by flushing the kidneys. I have noticed a regular fluctuation in my waistline measurement, and I have gained 2“ to my waistband over the length of this treatment. To date, despite taking the prescribed steroid tabs twice daily for 18 weeks, I remain at 12st 8 to 12.9lbs. When I started my chemo, I weighed-in at 12st 6lbs, with a waist of 34”. I am now a 36” waist.
11. Shortness of breath / Sleeping habits: This has been one of the main concerns during my treatment to date. Unfortunately, each of the Cyproterone, Zoladex, Docetaxel and the Prednisolone meds list ‘shortness of breath’ as a potential side effect in their supporting leaflet sheets. I have lived with a distinct shortness of breath throughout the 16-week process. However, this issue is not something that ruins my day, but something I simply manage accordingly. I have also found that this breathlessness impacts upon my sleeping habits, but I have also realised that sleeping on my side, as opposed to on my back, does help. As stated, the individual infusions left me exhausted during the week(s) following each chemo’, necessitating several daytime ‘sleeps’ to get me through the day. This, in turn, has left me lying wide-awake at night, unable to slip back in to a normal sleep mode, and when I did do so, I experienced some wired dreams. Clearly my brain was working overtime in the night hours, and I have frequently lain awake between 0100 - 0530 am on several nights. However, I persevered, adapting the frequency and length of my daytime sleeps, and I am now able to sleep well between10pm – 06/07am. In essence, it’s a case of experimenting, both with pillow types (cotton M&S seem to worked well), and varying sleeping habits. (I also dispensed my wife to the spare room in week 1 of the treatment to allow me to groan in peace!).
12. Eyesight problems: Docetaxel, and some of the other meds I am taking, all state they have the potential to impact on the patient’s eyesight. In my case, I have experienced significant visual disturbance throughout my treatment. This has varied from sore eyes, tired eyes, blurred vision and more recently short periods of double vision. These issues have become more pronounced following Cycle 3, 4 and 5 of my Docetaxel, with my increasing visual disturbance indicating a need for the onset of my need to take yet another ‘daytime sleep’. I have also experienced regular and increasingly frequent ‘twitching’ of my left+ right eyelids – very frustrating, but not life changing! Interestingly, this disturbance and eye tiredness tends to pass after a good 2 hour sleep, until I get tired again.   I also believe that my foolish behaviour after Cycle 3 (delaying daytime rest periods) left me totally exhausted, and this fatigue pattern then ran on into Cycles 4 & 5. - Take heed!
13. Blood Clots: To date, thankfully I have not experienced any.
14. Loss of Appetite: I have not experiences any. I eat a hearty breakfast (cereal & toast), have a mid-day salad with protein (cooked chicken or mackerel) and a hearty evening meal. Yes, the taste is different, but my dear wife ‘has the touch’ with a variety of home made sauces which render the meal enjoyable. Experiment with meals and dressings. The impact of the twice-daily steroid tablets clearly continues to drive my desire for food!
15. Sore throat: The chemo drug may cause a dryness/irritation of the throat. I notice this most at night, so I always have a supply of water, to hand, to lubricate accordingly. Not a major issue.
16. Exercise Regime: it is important to maintain a regular exercise regime to keep the leg and arm muscles in trim, as this treatment will result in muscle and body mass wastage. Although I am unable to do extended walks, I make a point of taking 2-3 short walks daily, as this gives me a supply of fresh country air and helps to keep me sane. I am blessed with beautiful rural surroundings, which is infinitely better than any medical supplement!
17. Blood Pressure: I also monitor my blood pressure using a Boots BP unit. It may be worth considering acquiring one to compile a log of your BP readings for the duration of your treatment, as you can then show the Chemo Team what your day-to-day BP looks like, as this may vary during the chemo infusion process. It is generally accepted that when you attend a hospital your BP may be elevated slightly above normal, (commonly referred o by nurses as …’the hospital attendance syndrome’). This helps to paint a better picture of your BP history over the whole treatment process.
18. Nasal discharge: You may experience additional mucus discharge form the nasal passage. Found this was a real pain in the earl 1-3 infusions, but t seemed to get reduced as the cycles progressed. It was at its worse when I stepped outdoor, necessitating plenty of soft tissues to hand! Likewise, I experienced nasal bleeds. They were only minor capillary bleeds, and not full on nosebleeds, but expect them to happen. It’s all part of the impact of the Docetaxel regime.
19. Provision of a Blood Sample before each Chemo’ infusion: You will be also expected to attend your local Chemo’ Unit to provide a regular blood sample 2-3 days before each of your infusions. This allows the team to check your blood for a range of issues, but most importantly, to ensure that your white blood cells, platelets and red blood cell count are at he correct levels to take you forwards in to the next chemo infusion. If your blood shows signs of an infection, or a drop in red cells/platelets, you may receive an injection / another treatment, and your next infusion may need to be delayed whilst your blood recovers to the required levels.
    I have been extremely luck to date. None of my Chemo’ session have been delayed… a major blessing!
    
    I hope that this article has been of some help to anyone either under the above treatment regime, or about to embark on something similar. I remain positive that this package is an option that will buy me additional time for the years ahead. I am fortunate that my QEHB team found my secondary sites whilst they were small & localised, and they should respond well to this package. I know that my treatment will not destroy my cancer, but if it buys me  additional years, I shall consider the last 16-18 weeks of pain and discomfort to have been a small price to pay, and I remain eternally grateful to my QEBH Oncologist and his wonderful Chemo’ & Radiology Teams.

Wishing you all the very best with any future treatment

Regards.

Ian http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Thank you Ian for this information. My husband is due to start Chemo in 3 weeks so very useful to read your experience. He was diagnosed in March with extensive bone mets and lymph nodes also affected PSA over 1000 when diagnosed. He has started on HT and his PSA has now dropped to 7.8 so that is obviously working. He was advised to sort out his dental treatment (extractions needed) before Chemo hence the delay in starting this treatment. He would like to keep working but from reading your experience I wonder if that will be possible, will wait and see.

Good luck in further treatment

Ian, fantastic PSA result but your oncologist won't be guided by that alone. He'll want to see the pins and needles diminish and I hope he keeps a careful eye on the breathlessness. In my case I had multiple pulmonary embolisms, which are taking months to go, caused by six cycles of docetaxel. A scan would show if you are affected in this way and blood thinning medication would deal with the problem. I hope it isn't that, but I would advise checking. Even in my case, it isn't a disabling condition, but certainly a nuisance. Good Luck.

AC