Enema of the State – Blog 56

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Results from the eligibility tests carried out last week in order for Dad to receive the Immunotherapy ‘go ahead’ are slowly starting to trickle in. The approval news is anxiously being awaited and now more than ever it’s needed. Dad’s mind, which was his last stronghold has started to waiver. The strength of mind he once had is struggling and whilst at times he is able to muster up the energy to put on a show for those around him, the truth be told he is simply shattered all day long and is beginning to question ‘what’s the point?’

Gone are the arguments with him trying to overdo it. He knows himself or at least feels now that he is simply not capable. The hardest part is seeing the emotion. His eyes ‘well up’ at the smallest of things and he is very reflective over life that was and life that could have been. He also has the ‘death look’. No easier way to put it. The colour has gone from his face, he looks very thin, sleeps all day and his eyes are bulging like a baby Gremlin yet with a vacant look about it.

He has no appetite and although the Oncologist has said having no appetite is to be expected, this has not eased his mind any further. He is desperate to eat, just simply doesn’t want to. The weight loss, as a result of not eating is stressing him out. Fortunately, the Oncologist has said that as long as he continues to drink, she is not overly concerned about the lack of food being consumed. The good thing is that he is finally drinking the required amount of fluids and his sodium levels have thankfully stabilised. With Sodium levels at 142 he is no longer having to go for regular top ups, which is a result worth celebrating.

We had hoped that we would have received the approval news for the Immunotherapy by today. When we received a call earlier inviting us to the hospital we hoped that this would be the lift Dad needed. Unfortunately, yet another hurdle was put before him. This time they have been asked by the specialist team at Valencia, who are running the Study Trial, that Dad needs to have a Colonoscopy performed.

Whilst pretty much all eligibility checks have been passed, one of the scans has flagged up a potential issue in Dad’s colon.

At this stage they cannot be certain what the scan is showing, hence the request for the Colonoscopy. There is a chance it is another disease known as Diverticulitis. This itself should be fairly simple to treat (in respect to everything else that is going on). It has also been suggested that it could be that the cancer has spread to this area too.

In preparation for next week’s ‘examination’, his diet will now be restricted. Technically this isn’t really an issue as he barely wants to eat anyway. His allowable foods will be just the following: tea, coffee, filtered juice, non-fizzy pops, soup, fish, rice, toast & hard cheese. He is not even allowed milk, so I can imagine his displeasure when he is served either a black tea or coffee.

In preparation for the Colonoscopy Dad will need an Enema so that tests can achieve a good result with clear visibility. All I would say is that based on how the Enema needs to be administered and the results that should be achieved in just 5 minutes, then none of us truly wants to be present when Dad administers the two 250ml solutions on Tuesday night and Wednesday morning!

The result of the Colonoscopy will also severely impact the Immunotherapy eligibility. If there is a tumour, the Trial will be terminated. This would be an extremely bitter pill to swallow at such a late stage; especially given that the Trial is Dad’s only real chance of a longer life. If it turns out to be a disease, other than a tumour, then the Immunotherapy could still be given the green light.

It’s going be a long few days and the light at the end of the tunnel is not looking very green at this stage.

Immuno Olympics – Blog 55

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The long-awaited results week is upon us and news is coming in thick and fast.

On Tuesday, the eagerly anticipated phone call was received and to everyone’s relief, especially Dads, it was confirmed that his Cancer did have the protein that the Clinical Trial is designed to work with.

This was just the start of the week of hurdles Dad would now need to jump over to ensure he continued to be eligible to receive the Immunotherapy treatment that is, in all honesty, his last chance of living an extended life.

Having been informed that the protein was present, the Doctors had scheduled in two visits to Valencia ‘La Fe’ Hospital. The first was today and consisted of a series of blood tests, an ECG, a general health review and a meeting with the Doctor.

The most important element of today’s visit was the sodium levels. Should these be out of kilt, then the trial would not be able to continue and Dad’s chance at treatment would be cancelled. The amazing thing is that now there is a chance, the tests are being carried out with results coming back quickly.

I must admit I did have to feel sorry for the nurses today, as it took them a good 45 minutes just to get the blood samples they needed due to how poor Dad’s veins now are and the fact that the veins keep collapsing and making the blood extraction process nigh on impossible. Thankfully, the nurses are extremely patient.

The sodium result was that his level is now at 140!!! Ironically this is technically too high with the ideal being between 125-135. This however, is the game of balancing that the Doctors have been battling over for the last few weeks; it would appear though that a good compromise has now been found.

Dad is under strict orders to consume no more than 1 litre of fluid per day. This includes tea, coffee, water, juice, soup etc. This coupled with the fact he has been put on sodium tablets has clearly done what was needed.

There is a slight issue in that the salt overload and lack of water is impacting his renal test results however, again this is a compromise the Doctors are happy with. It also means that the ‘Immuno Go Ahead’ Is still within grasp.

The next hurdle comes tomorrow with a full body scan to be conducted (MRI & CT scan). This is so that the Doctors running the trial can take a true snapshot as to exactly what they are up against to ensure that they can fine tune the treatment and tailor this to Dad’s requirements. It could still be that things have gone too far. The hope is though that having reached this far, they will give it a blast regardless.

Once we know if Dad gets the full go ahead I will provide an Immunotherapy update in terms of what to expect, lengths of treatment, side effects, disclaimers etc… We should know before the week is through.

Finally, having returned after a few days away, I must admit that I have not seen Dad look so terrible. This is not to upset anyone, just it’s only right you know how he is both physically and mentally.

Since coming out of hospital he has barely moved, is tired constantly, is, despite what he tries to claim, experiencing countless bouts of pain, looks pale, is sleeping the majority of the time, struggles to do much without getting out of breath, has lost weight and has a very small appetite as well as feeling fuzzy, out of sorts and as he says is “a little spaced out”.

Due to the pain he is experiencing his Morphine patches have already been increased and he also has pain lozenges to suck as well as other painkiller tablets to take.

All this said, his mind is still strong. He is still laughing at times, making jokes, despite saying earlier that he is upset that he hasn’t told ‘himself’ a good joke for a while, and continues to do the worst Cilla Black and Prince Charles impressions known to man.

I admit though that he is not on the scrap heap yet and this week’s news has thankfully gone a long way to help give him a much needed boost. In fact, it’s given us all a much needed pick me up. The road ahead though is still full of many hurdles. The good thing though is that whilst the hurdles are standing in his way, Dad still wants to leap over each and every one of them, failing that he will just be trying to kick them out of the way.

No Place like Home – Blog 54

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After what we hoped would be a short top up visit to Hospital, Dad has finally returned home… 7days later than expected.

The last week has seen him deal with a number of different emotions, lots of pain, many low moments and confusion as to which was up & down.

Needless to say, he has been in the right place, but like with anyone after a short stay away, it’s great to be back in your own surroundings.

The last week has bought it home to Dad just what he is up against. Unfortunately, the patient next to him in the ward lost his own battle and passed away. The patient that followed, also entered with just a short life expectancy given. I guess this is the problem with being put on an Oncology ward. You get all the expertise of the Cancer specialists however, also get the harsh reality presented to you on a plate that Cancer continues to be a killer.

With regards to his heart I can thankfully confirm that all is clear and there are no signs of the heart weakening as one doctor had suggested. There is still no true explanation as to why his blood pressure keeps falling so rapidly causing him to collapse; though the specialists are attributing it to the Cancer spreading rather than anything else untoward.

As for the pain he is experiencing, Dad has been prescribed Morphine Patches to help give him some much needed comfort. The provision of these pads is often seen as a last resort for Cancer patients to help them in their final moments. This coupled with the Oncologist again asking where Dad wants to die when the time comes does paint quite a sorry picture. I must admit though having looked online, the view of Morphine Patches as a pain treatment is often perceived incorrectly. Doctors are now heavily encouraged to provide patients with the relevant pain treatment for their condition – no matter what stage of Cancer they are at. Not all bad then I guess.

As far as being home and getting on with things, it’s a little too early to say. Dad is on a 1 litre per day fluid intake regime and this now includes everything; Tea, Coffee, Juice, Water, Soup etc… Too much or too little will cause the sodium to drop too quickly or his kidneys to malfunction. It’s also not entirely clear if the 1 litre amount is truthfully too much or too little. Any signs of headaches, fuzziness, additional pain must be acted upon and the Palliative Care Team or hospital need to be notified. He also now needs to have salt on anything and everything he eats.

All I can hope for, at this stage, is that he stays fit and strong enough for next weeks’ trial decision. One thing I do know, is that having stepped away from Spain for a few days I will be glad to be back there on Tuesday.

Dark Skies – Blog 53

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Not at his finest

I left the last blog stating that waiting 2 weeks for the results of the Immunotherapy eligibility felt a little bittersweet given Dad’s current prognosis and health.

Unfortunately, as feared, he did end up in hospital the very next day having collapsed at home; this was last Thursday. We thought sodium levels must have dropped and that the hospital would top up them up as before and that he would be out the following day, giving him the opportunity to live a little more. The collapse though was a little disconcerting.

Sadly, a short hospital visit was not to be. Although the sodium levels were down, he also now had SIADH (Syndrome of Inappropriate Antidiuretic Hormone Secretion). https://en.wikipedia.org/wiki/Syndrome_of_inappropriate_antidiuretic_hormone_secretion.

SIADH is an imbalance in hormone levels causing him to retain fluid. This felt like a cruel joke. We had spent so much time getting him to drink water and now he needed to have none, as his body was unable to flush it out due to the hormonal imbalance.

This also caused a conflict in the doctor being able to treat for the low sodium. They were unable to increase the fallen level until Dad had managed to flush out all the excess fluid he was carrying. Friday arrived and no sodium treatment had yet been given with the medical staff closely monitoring Dad’s fluid balances. The blood tests taken first thing confirmed that his fluid levels were still too high and that the sodium level was now at just 120; lower than it was last week when we took him in. This in turn meant there was no chance he would be coming home today.

By Friday night he had been transferred to a ward on the Oncology floor with Doctors wanting to keep a closer eye on him. They said that he would need to be there for the next 3 or 4 days until things had settled down. Treatment for the sodium level could now start to be given in a very controlled manner and pain killers were also possible with Dad experiencing head aches and shoulder pain.

Saturday morning came and Dad decided he would have a shower to help himself feel brighter. Unfortunately, this had the adverse effect. Having reached the bathroom, he then collapsed for a second time, requiring assistance from the family of the patient next to him. It turned out that his blood pressure had fallen suddenly, causing him to briefly pass out. Thankfully people were around and he was soon attended to and placed back into bed.

Rather than feeling better, he now felt worse than ever, looked worse than ever and was in a terrible state. The Doctors put him on complete bed rest and insisted that he must not get out of bed for anything, not even to sit on the edge of it to eat his dinner.

Anxiously waiting for news, the weekend has felt very long. Dad’s health is at the worst it’s been since his original diagnosis. Having had some further tests on Monday the good news was that his sodium levels had more or less returned to normal despite still being slightly down. The bad news is that the Doctors have indicated that the early results with regards to is faltering blood pressure is that his heart is now weakening. This is made worse for the fact the scan from his original Cancer diagnosis indicated that the tumour was wrapped around his aorta which was why the Cancer was not operable in the first place.

It’s too early to say anything more at this stage. The Doctors are wanting him to remain in hospital with no discharge date mentioned. They want to carry out more extensive tests and whilst he is no longer on strict bed rest, he has orders not to go wandering around on his own as they fear he may collapse again due to how unstable his blood pressure is. This even includes him not being able to toilet alone which itself is not the best of signs.

I guess the best thing I can say is, that he is in the right place. Whilst I know he would prefer to be at home, for now being in hospital is a good thing. Tests can be carried out and he can be observed 24/7. He is also getting 3 meals, 2 snacks, free heating and lots of visitors. Good times.

Finally, whilst the Immunotherapy treatment may not necessarily be a cure, should he be eligible for the trial, it is a chance of an extension to his life. This now, more than ever is hope worth clinging on to.

Immunotherapy (Rovalpituzumab Tesirine: Rova-T SC16L6.5) – Blog 52

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Yesterday we attended the scheduled appointment at the Hospital in Valencia with regards to seeing if Dad would be a suitable candidate to take part in the Clinical Study being carried out on patients with Lung Cancer.

The following website contains more specific details about the treatment Dad would receive if eligible and goes into all the science behind it: http://www.stemcentrx.com/ct-small-cell-lung-cancer.html

Having met with Dr Oscar Juan Vidal (specialist in Oncology & Haematology), Dad did his usual jolly upbeat banter before then being hushed so we could actually hear about what would happen next.

The specific name of the treatment/Clinical Trial is: Rovalpituzumab Tesirine: Rova-T SC16L6.5.

His lung biopsy will be sent to the specialist laboratory in South San Francisco so that it can be analysed and assessed to see if it contains the necessary DELTA 3 Protein (DLL3) that the treatment is designed to work upon. This we have been informed is present in between 60-80% of Lung Cancer patients. Odds therefore are in his favour.

The antibody that has been created by the Clinical Study team is designed to target the DLL3 Protein, enter the tumour and release a potent drug to kill the cells. In turn it is also believed that this targeted method will reduce the impact to the healthy cells. This is especially important at this stage where the administration of a third round of Chemo is being questioned due to the impact on the healthy cells it could harm.

If the DLL3 Protein is not present in Dad’s cancer, then the Immunotherapy treatment will not be possible. Results of testing for the protein will not be known for 10 working days so we expect to know more around the 25th January. If it is a no, then we will attend the pre-scheduled appointment with his usual Oncologist and review what happens next, be this Chemo round 3 or continual monitoring and topping up of his salts etc.

The Clinical Study is still in trial stage so it is difficult to say exactly what impact the Immunotherapy would have on Dad’s cancer. It has been stated however, that results thus far have proved to be promising.

We also know at this stage that should he be eligible, he would only need to attend two treatment sessions. The first would be given more or less straight away and the next 6 weeks later. These would be as a day patient and treatment drugs would be administered intravenously.

There are side effects such as fluid retention, skin rashes etc. though nothing that sounded as worrying as the long list attached to Chemo. There are also associated risks, though the specialist was not prepared to divulge any more detail until the go ahead was given. In essence we need to simply focus on the risk of not having the treatment being worse than the risk of taking part.

The issue we now have is that before Christmas the prognosis was for a survival of ‘weeks’ rather than months; waiting a further two weeks for results feels a little bittersweet.

Dad’s health is up and down like a yoyo and will more than likely he will be back in the hospital for a sodium top-up before the week is out. We also had the home care doctors visit the house today to perform a general check-up and take some blood.

This didn’t quite go to plan with Dad’s veins refusing to give any blood away. The poor doctor left with a minimal amount of the required blood and was crest fallen having stated that this was the first time in 40 years he had failed. This was made worse by the fact that he is the doctor the others go to if they struggle. Blood test results are scheduled for tomorrow morning with the potential for further blood extraction to be attempted if not enough could be analysed.

They have already pre-warned us that Dad could be suffering from Anaemia which would require hospitalisation. This doesn’t even take into consideration the ever falling sodium levels.

Dad himself is doing okay, all things considered, but emotionally the realisation of what is happening to him is kicking in. Whilst he still has the ‘I will beat this’ bravado, it is clear to see he also has the look of concern and anguish as to what may be coming. The thing annoying him the most is his loss of appetite. He barely feels like eating anymore and when he does it’s just a couple of mouthfuls. The main thing for any of those concerned though….. he is still eating and enjoying Bovril, even with his scrambled egg!

I will keep you posted re the Anaemia should there be any concerns, else will update later in the month once we know more from the results from San Francisco. Dad had hoped he may get a free holiday to America out of this.

Unfortunately, this won’t be happening.

Nothing Ventured, Nothing Gained – Blog 51

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Dad managed to make it to the scheduled appointment on 4th January for his progress review. The appointment got off to a bad start with a misunderstanding as to the fact that we were meant to have arrived earlier for blood tests however, thanks to English naivety and the batting of our eyelids the medics took pity on us. He had blood taken and we were asked to wait a couple of hours for the lab to get the analysis done.

Surprisingly at this stage his sodium levels had kept themselves stable though he was still showing signs of dehydration. His kidneys were also not at full capacity though the Oncologist was happy with how Dad was in himself and the balance that had been found.

The Oncologist suggested an appointment be made for Dad to attend the hospital at Valencia on Tuesday 10th so that a specialist could look through his medical file to consider him for Immunotherapy treatment. Whilst this treatment is still in ‘clinical trial’ status for Dad’s advanced stage of cancer, it has at least been tested on other forms of lung cancer with some promising results.

Don’t get me wrong, at this stage of the game, Immunotherapy is very much a shot in the dark and it is unknown as to how it will impact Dad’s cancer. However, the Oncologist has said that if she were to pick which road to take; between either a third round of Chemo or Immunotherapy then she would recommend Immunotherapy without a doubt. This is mostly because she believes whilst a third round of Chemo is possible, it may actually cause more harm than good.

The thing with clinical trials is that whilst all protective measures are taken things can go wrong so, more than likely if he is considered, a disclaimer will need to be signed. Personally, my view on this is that it is worth the shot; nothing ventured, nothing gained. It also means he still has ‘hope’ to cling onto which is to be welcomed.

Things going wrong was made ever more the clearer with another unanticipated hospital visit yesterday! Dad had started to have a ‘fuzzy’ head and pains in his sides as well as diarrhoea. This time, rather than second guess and wait, we took him straight to hospital. Having waited a couple of hours and following numerous tests it was confirmed his sodium levels had fallen and that he would need to stay in for 24 hours.

They confirmed also that he is still showing signs of dehydration. The thing is he is NOT drinking the required amount of fluids. He claims he is but the evidence shows otherwise; he isn’t drinking and will do anything and everything to avoid drinking, including trying to fool those around him.

I once said I was proud of him and I am. However, one area where my patience is tested is in his attempts to subvert his fluid intake. He knows he will die if he doesn’t drink enough. We have tried the nice approach, nasty approach, informed approach, the medical approach, the sneaky in other food approach and none are working.

The best thing I can say is that his mind is still quite focused on going forward. He is, deep down, aware that his time is nearing an end however, he does also believe that a miracle cure will eradicate the cancer from his body. It’s this mindset that has kept him going, possibly in some respects more so than any fluid intake requirements.

Good news came today in that he was released from hospital. It has been confirmed that he will need sodium ‘top ups’ quite frequently as his levels are expected to constantly drop. He has also been informed that without drinking, he will suffer. Still he does not listen….

Spirits were boosted this week by a couple of family reunions.

Steven & Nicola visited on Monday and got to spend some quality time with Dad in his own environment. We visited the local town of Canals and had a nice few hours together. Dad especially liked being able to see Nicola, having not manged to see her when Steven and his two kids visited just before Christmas. More visits are planned.

On Wednesday night, Dad’s two sisters and niece all arrived to visit. They didn’t get to the house from the airport until 23:15 though. Dad had stayed up, especially to see them arrive at the house; normally he would be in bed by 22:00 so you could tell how excited he was about seeing them. I won’t go into too much detail about Thursday’s events, but I will say the day was brilliant and gave everyone the opportunity to enjoy each other’s company and build some lasting memories.

Dads’ presence in Spain does make it awkward for family and friends to see him, but I can assure you all, that he is happy here and content that this is where he wants to live out his days. It does mean that for some they won’t get to see Dad before his time comes, but it doesn’t mean that he isn’t thinking about you as much as you will be about him.

I would encourage family wanting/able to come and visit, to do so sooner rather than later. Regrets take seconds to form but can last a lifetime.

 

Rubbing Salt in the Wound – Blog 50

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I have mixed feelings for having had Dad home for Christmas. Whilst his presence on the morning of Christmas Day was undoubtedly a good thing, his overall health was suffering due to the sodium tablets he was taking.

He had begun to show signs of dehydration, though this was known to be a side effect of not being able to have much fluid. I do however, have faith and confidence that the Oncologist knew what was going to happen and partly this was why a home visit had been scheduled five days after going home. This meant that any concerns could be addressed and sure enough, the day after the home visit, when the results were known, we were informed that Dad needed to return to hospital.

The most unexpected result was that his sodium levels had all but returned to normal with the blood tests revealing it to be at 134mEq/l with the normal range being between 135-145. Therefore, the sodium tablets had done the trick. Unfortunately, just to rub salt into the wound, dehydration had started to cause Renal Failure with his kidneys starting to malfunction and give way.

His Creatinin levels had reached 6.7mg/dl with normal levels being between 0.6-1.10. Creatinin is a waste by-product that is filtered through the kidneys via the blood. The Urea levels were also way to high with his results being 156mg/dl with normal range being between 10-50. Urea is produced in the liver then passed and filtered through the kidneys until being released via urination.

Returning to the Hospital (Lluis Alcanyes), we reported directly to the A&E department where Dad was pretty much seen straightaway and taken into the Emergency Observation Ward; he was put on four drips. One drip was an Isotonic Saline solution, another containing Bicarbonate Soda, another with Sodium Chloride and the final containing a Paracetamol solution for the pain.

You could see a change in him after just an hour though we had been informed that we needed to wait to see a specialist as there were concerns regards the overall kidney condition and they were not sure what line of treatment, if any could be taken. A few hours passed by and he was then transferred to a ward to receive continued observation and the required drips to help the kidneys effectively ‘reboot’. If this failed, then, and only then could dialysis be looked at as an option. Therefore, having returned to hospital on Wednesday we were looking at a discharge date of New Year’s Eve. This is clearly depending on what happened over the course of these 3 days.

The first night was the worst with him experiencing crippling pain. Fortunately, this eased once he ‘demanded’ to have the urethra tube removed at 2:30am. He described the pain as worse than giving birth. I am not going to broach the ‘man vs woman’ pain argument. All I will say is that Dad does not feel pain easily.

The test results we received on Thursday morning were promising. Whilst he was still severely dehydrated, with the nurses now pushing him to drink as much water as possible, the Creatinin levels had improved going from 6.7 to 4.4. This effectively showed that the kidneys may just at this stage ‘reboot’ as hoped.

Psychologically he is not in too bad a place, though still struggles to grasp what is really going on. He has however, had a word with his immune system’s army, including, Jim, Simon, Spartacus, Florence, Marie and Gibbo and informed them all to get their act in order. Errrr…… don’t ask!

Friday (today) had its own complications with his drips not being able to be administered. Basically, he fiddles with the wires which in turn, causes the drips to stop working properly. It then causes the blood to flow back up through the tube and stops it working altogether. This itself would not be so bad, however as his body is slowly giving up it is becoming increasingly more difficult for them to find suitable veins to administer the drips through.

The results we received showed a further improvement with the Creatinin level now being at 2.5 mg/dl and the Doctor felt that the results should be back to normal in the morning. She was also almost happy to let him come home today though was fearful that he would not continue to drink the required amount of water. This time he is now back to minimum 2 litres of water per day with a Mediterranean diet to be followed. Basically, healthy food and no crap.

We now find ourselves in quite a vicious cycle. Should Dad be allowed home tomorrow as planned, the worry is that the Cancer is now so advanced that the sodium levels will nose dive as they did just two weeks ago. If this happens then no cancer treatment including chemo or immunotherapy can be discussed. Treatment would then have to be given to fix the sodium levels which in turn, would more than likely, cause renal complications again. This does not even take into consideration the fact the cancer is continuing to grow and travel through the blood.

It has already been suggested, and we do have to be realistic about this, that there will only be so many times these ‘top-up’ treatments can be given. It is highly unlikely, even at this stage that he will ever advance to Chemo or Immunotherapy treatment stages. The thought of him being allowed home tomorrow, only adds to these concerns. Whilst he does seem almost ready it’s just impossible for us to know how he will react and what will happen next. It also does not help that he is a big kid when it comes to drinking water and makes drinking 2 litres of the stuff seem like he is being tortured. Suggestions on a postcard greatly appreciated.

The hope is that when home, he will have enough energy to at least go out and see the local sites, if nothing else.

The best thing about it is that we will also be getting some visitors over the coming few days. David is making a return on New Year’s Eve, Steven and Nicola will be appearing on the 2nd January and Dad’s two sisters; Margaret and Glenda as well as his niece Belinda will be making an appearance on the 4th January. At time of publication, these will all be surprise visits to give him a boost and encourage him that life is worth fighting for.

The last few weeks have been tough. Dad has been tearful, emotional, has not seen the point in going on and struggled with pains, dizziness, nausea, headaches, confusion and major fatigue. Regardless though we will be seeing him into 2017.

Happy New Year everyone. Love from The Bob Garratt & Co xxx