Picking up the iX20

[Bob Williams]

Last week at Read Hyundai:

That’s the very helpful Motability guy, Wayne Healey: this dealership does this with every Motability lease. After a few days’ motoring, have to say that I really like this car, but it will never be quite as comfortable as the Tucson, which was like sitting in an armchair. It really shifts for a 1.6 auto, though.

Steve, if you compare last year’s photo you will see that I have dropped just under 2 stone. Have to order some new trousers, got just that one pair to fit and have not worn them for years. Soon be back to my running weight, but cannot even walk properly yet!?☺

When the Thought Police arrive at your door, think -
I'm out.

[Richard]

A couple of nice images for the family album there. It is good when a dealer goes the extra distance to make you feel valued and clearly they did in your case. Keeping repeat customers is part of the game and I am sure that your loyalty will be valued. Glad that you are enjoying the car, a new car will always invite comparisons with any previous vehicle, but on balance you appear to be pleased. Any car that you can enter and exit has to be better than one that you need steps or a crane to enter or exit.

Do you feel better for the weight loss? I assume it was at least partially enforced by circumstances, two stone made a difference to me, though a few pounds ha climbed back more recently. I am trying to prune them back, but it is an uphill battle. Taking my daughter’s dogs out is part of my plan, though the combination of a dull day and an extended hike appears to have left them more interested in their baskets than anything else. Yesterday I made the error of giving them a very early hike before I left for the hospital for my nose job, today the Husky was on my case as soon as I was dressed. She left no doubts about what I was expected to do – I must brush her again today. She could moult for Britain given the chance.

[Bob Williams]

I lost most of the weight in hospital Richard, but for 3 weeks afterwards I had no appetite. I lost many of my former tastes: chocolate, biscuits and a lot of sweet stuff  no longer appeal to me. I have always liked veg, but now find myself halving the potato intake and really liking veg. I have also developed a craving for clementines and satsumas, buying a dozen a week and eating 2 at a time after main meals. We have also changed eating habit times, having a small breakfast, main meal at lunch and a small tea, eaten before 7pm, with nothing eaten after that. I am walking quite a bit now, although SWMBO’s hip is still stiff and she cannot walk as much. I am finding undiscovered nooks and crannies around my village: only been here since 2003!

I do feel better for the loss within myself, although my constitution has yet to deal with the Chemotherapy that will be scheduled by my Oncology consultant today at 3 pm.

The dealership is one I would recommend, but I have been told that other Hyundai dealerships are not as attentive. I remember Huskies and Alaskan Malemutes from an old friend who used to breed them. He involved his whole family in regular grooming of the dogs: his children caught on and demanded payment! I believe he has one old Husky left now. He was a reputable breeder with a large kennels until about 20 years ago, made quite a lot of money out of being a trusted breeder, the business and retired.

When the Thought Police arrive at your door, think -
I'm out.

[Richard]

I hope that your visit to the oncologist went well and that they are as keen and attentive as the one my wife sees. My wife with have her PICC line fitted tomorrow and I have been deputed to prise the drug supplies covered by a prescription out of the hospital pharmacy while that is done. I will also try to get a blood tested sort out for myself, another job bundle that I picked up this afternoon, I need to renew my repeat dispensing shipping order.

I wonder when you will start the chemo? In the meantime getting as fit as you can should do no harm. I understand that you might find you appetite changes again once treatment starts with smaller meals more often. I think there are one or two with previous chemo experience and it might be nice to hear their input.

Huskys can look very fierce and off putting, but when well adjusted they do love company of both humans and dogs. This one has the dodgy habit of trying to stand up on two legs to say hello. She looks big, but inside a huge furball there is only a smallish dog on  stilts. She is a fussy eater, only having what she wants when it is  wanted. While a Labrador almost inhales food she checks every item in her bowl before selecting the next item to eat. She does daunt a few in the family, but I get along with her and can do anything sensible or needed with her. This includes taking biscuits away when she wants to guard them and gets stress by the guard job.

[Bob Williams]

I saw the oncology consultant and was very heartened by his plain, no-nonsense explanation of what my options are. His summation after all evidence was in, was: –

Within the cyst taken with the pancreas tail, were cancer cells. These are all gone from the pancreas, which is clear. There were also cells in the Spleen which was removed. Apparently, there are 11 abdominal Lymph glands and one of mine has microscopic cancer cells, which will grow if left untreated. I am to start chemotherapy in two weeks, as now is too soon after the Op and I have to carry on with my walking programme and get fitter. I mentioned exercises from a Physiotherapist, which had never materialised, but he took a dim view of them and advised me to just carry on walking, as the best exercise for me. After his assistant checked my height & weight, he said that my weight loss is continuing, but the rate of loss has slowed down and I appear to be getting fitter: muscle tone is improving. I am now a shade under 11 stone, which I have not been able to say for many years. 10 stone and 9 pounds, was my running weight as a very fit young man.

The chemo will take the form of 2 sessions a week for 3 weeks, then a week off, for a total of 6 months. If I wish to have a short UK holiday break, he will adjust the sessions to suit. I have also been offered new drug, just out of trials, which has been found to extend chemo benefits by at least 10%. It is administered at the same time as the chemo and I have said yes to that. Any side effects and it will be stopped, but to me a 10% benefit is an advantage if it works. The alternative is plain enough.

All in all, I believe in this guy and I will continue to listen to advice and fight this noxious disease.

 

When the Thought Police arrive at your door, think -
I'm out.

[JayCeeDee]

Bob Williams wrote:

The chemo will take the form of 2 sessions a week for 3 weeks, then a week off, for a total of 6 months. If I wish to have a short UK holiday break, he will adjust the sessions to suit. I have also been offered new drug, just out of trials, which has been found to extend chemo benefits by at least 10%. It is administered at the same time as the chemo and I have said yes to that. Any side effects and it will be stopped, but to me a 10% benefit is an advantage if it works. The alternative is plain enough.

 

Just checked the medical paperwork and the chemo I had was Bendamustine. This was standard chemo, but was supplemented by the anti-body treatment Obinutuzumab ( Gazyva/Gazyvaro ). The trial was to test the efficacy of the Gallium with Bendamustine, as opposed to the usual ( already successful ) Rituximab/Bendamustine combination.

 

This was on the GA101 trial ( Gallium ) which later became known by the trade name Gazyva.

Details HERE if you can get past the techno-medical terms and percentages quoted.

 

The anti-body treatment was explained ( simplistically ) as an anti-body that attaches itself to a protein ( CD20 ) on B-cells also known as Lymphoma cells ( these cancerous cells are produced by the body, which collect in the lymph nodes and enlarges them. )

Because they are produced by the body, our immune system ignores them. When the anti-body attaches itself to the B-cells and protein, it starts to kill it off – the body’s own immune system then kicks in to attack it as well.

Technical version :-

About Gazyva/Gazyvaro (obinutuzumab)
Gazyva/Gazyvaro is an engineered monoclonal antibody designed to attach to CD20, a protein expressed on certain B-cells, but not on stem cells or plasma cells. Gazyva/Gazyvaro is designed to attack and destroy targeted B-cells both directly and together with the body’s immune system. Gazyva is marketed as Gazyvaro in the EU and Switzerland.

 

The effects of the Lymphoma are similar to those stated by Bob above. My spleen was enlarged to 16/17cm plus lumps in neck,  armpits, chest and groin. Spleen was down to 12cm following the treatment.

As it happens I’m booked in to the Marsden on Monday for my 6 – monthly CT scan followed by an Outpatients appointment on Thursday when they’ll draw bloods and analyse them.

Good luck with it all, Bob – you’ve got the right approach to it!!

 

[Richard]

John, Bob, I am sure that was a helpful insight for Bob, whose programme sound quite ‘hard core’ though I guess every cancer and every chemo programme needs tailoring. My wife will probably have 8 sessions, 4 at two week intervals and three more at 3 week intervals with loads of tests and appointments between each one. She was advised by every one to go the PICC line route rather than the cannula in the hand method which can have more difficulties. I wondered which method you two encountered or had planned for the infusions?

After chemo, and assuming it progresses as hoped the operation will then follow. So called radio therapy may then still be needed in her case.

[JayCeeDee]

I had the cannulas – no real problems throughout, or till now, – a couple of times my veins objected to being attacked and slunk off into a corner hiding, but mainly it was straightforward – a couple of times my arm felt like a dart board but that is just part of life ( I had a lot worse at some Blood Donor sessions in my younger days) – some good nurses, some less good, but overall, mostly superb.?

Following an adverse reaction to the first dose of anti-body, they increased the scheduled amount of time on the day for the antibody/chemo, increased the strength of the dosage more slowly throughout the day, plus steroid and some other anti-sickness tablets and flushes before commencing.

The initial reaction I had was a one-off – I started feeling warm at my “core” with this rising through my chest and neck ( felt like a Victorian swoon ) and then I started shaking violently, like I was fitting. Next minute I was surrounded by nurses, consultants, specialists and pharmacists. They stopped the infusion and spent the next two or three hours with tests, obs and questions!!

Following on from that little hiccup, everything went normally and no further complications.?

[The Duke]

You guys are hard core in you med knowable. I know the wife can’t take thd anti sickness drugs, (two types) as they make her worse. Atm she is having extra treatment for blood cells, to boot immune, this bout is also lymphnode realted.

As I’m terrible with normal names, i dont really what anything of the pills and poisons are called.

Also her last dose two days ago, has nocked her off her feet. Still being sick, almost 48h after!

All fun and games. Hopefully her last trip (again).

[JayCeeDee]

I was lucky – I never needed the anti-sickness pills when on the chemo. However when the last bout of shingles left me feeling sick, the pharmacist recommended a particular drug. It turned out to be the same as the one they give the wife for her Menieres.

Pro-ChlorPerazine, also known as Buccastem/Buccal. They are just a little tab that goes under the tongue or against the gum for speedy absorption. Pharmacist mentioned they were fairly innocuous, so maybe worth an ask. They did the job for me at the time.

[Richard]

I shall not show this thread to my wife, whose planned PICC line appointment has just been delayed until Tuesday for quite reasonable, yet still unfortunately timed reasons. I spent a while at the hospital pharmacy getting (a) the third degree and (b) the first lot of the ‘preparation’ tablets. Item (a) caused a few concerns, does she have any allergies, yes severe with anaphylaxis causing hospitalisation as the result, but the cause is not known, tests have been/are still awaited since November… Thank god for the parking pass, it took about an hour so total parking time was well over an hour.

I am off to another hospital this afternoon for a blood test, the waits there are normally better.

[The Duke]

Lol, my wife doesn’t come here. This is my place to vent. It’s the modern take on the Bar.

It’s like one big support group. ?

[Bob Williams]

The Duke wrote:

Lol, my wife doesn’t come here. This is my place to vent. It’s the modern take on the Bar. It’s like one big support group.

A big Amen to that, Steve!??

JayCeeDee:

John, many thanks for those informative posts. I have printed out your words and downloaded the information. Information is key, when it comes to this stuff, I’m sure you will agree. I have read the information you gave, it’s a big help, and will wade through the PDF. In my case, my spleen was too far gone and had to be removed as a probable source of spreading cells. that means that I will be taking certain drugs for the rest of my life and having vaccinations for a few weeks, but as you say, just part of life.

Regarding cannulas and veins: I had loads of those during hospital recovery. At one time, two in my right arm, one in my left, another in my left hand and another big one in my neck, with a feed tube down my nose and throat. The one in my neck is the only one to have left  (fading) marks, but they would not shave my neck before jamming the thing in, and I am one hairy Neanderthal, so the dressing kept coming loose and disturbing that one, which had anything up to 3 different feeds at any one time. Getting to sleep, forget it with that lot hanging from my bod! My arms recovered well: just yesterday I had 4x vials of blood taken and the mark is almost gone. I had to ask that they use my right arm, as for some reason the veins in my left are difficult to get a line in. “Human dartboard” – dead right John!

I hope you recover from your own troubles, all the best.

Cheers mate, Bob.

 

When the Thought Police arrive at your door, think -
I'm out.

[JayCeeDee]

Cheers, Bob. Yes I’m doing fine currently. Only suffering from a residual hypersensitive tingling over my back and sides from the shingles.

My thoughts are that they tried to go down the cheap cream route instead of the expensive, but effective, anti-viral tablets. The cream did nothing and when eventually they concurred with my ( and the pharmacists ) argument in favour of the anti-virals it was too late to prevent it going wild across my back and around my side!!

[Ed P]

Very high doses (2000IU) are reported to help if taken very early in the attack.

[Tippon]

Richard wrote:

My wife will probably have 8 sessions, 4 at two week intervals and three more at 3 week intervals with loads of tests and appointments between each one. She was advised by every one to go the PICC line route rather than the cannula in the hand method which can have more difficulties. I wondered which method you two encountered or had planned for the infusions?

I’ve had low doses of chemo through both the PICC line and cannula, and they’ve both got their ups and downs.

The PICC, once it was in, felt much easier during the infusion. I’m not 100% sure any more, but I think the infusions were quicker too. I’ve had lines in my neck, chest, and groin. They were all uncomfortable at first, but they freed up my hands. As the infusions I had could take up to eight hours, that was a major benefit.

Inserting the line is a minor procedure though, which comes with its own problems. The line could only be inserted by a doctor, so if there was an urgent case on the ward, I was waiting. At least once it turned a ‘day trip’ (journey out from the ward) into an overnight stay. The procedure is uncomfortable, and the feeling of the line going in is odd! There’s also the issue of keeping the line clean if your wife is allowed home with it in (not everybody is, but the doctor should let you know beforehand).

A cannula is much easier to insert, and after the first few minutes, your wife probably won’t notice it. Part of my condition means that the veins in my arms are very hard to find, so the cannula would have to go in my hand. As there’s only a short amount of vein to play with, I couldn’t use whichever hand it was in. Not the end of the world, but I couldn’t hold a proper book, and learned which beep from the machines meant straighten your bloody hand! 😀

A downside of the cannula is that a new one has to be used every time, meaning a new injury as it’s placed. If your wife has trouble with her veins, they may need to use the same site more than once, and that may mean that it doesn’t heal in between, especially with a relatively short window between sessions. Again, not a major problem, but it’s worth being aware of possible discomfort.

Whichever method she chooses, I hope it goes as smoothly as possible for you and your wife, and for you too Bob.

[Richard]

Thank you Tippon, yes she has had serious problems with the small cannulas in the past, in fact ‘shy veins’ would barely start to address the issue. Her last experience was with an anaesthetist who she felt was more at home using a pneumatic pick to dig holes in the road. At the conclusion of that procedure, (nothing to do with oncology) she had her anaphylaxis episode so a whole load of negative surrounds that experience. She was booked for Thursday, but it has now been put back to Tuesday with the first infusion on Wednesday.

So far this week has seen 6 appointments/hospital visits between the family and already there are four on just two days next week. Fitting life round that lot is a challenge. Still having decided that now is a good time to stop the evening wine and nibbles my weight, though not my blood pressure has improved so weight loss appeared to be back on its rusty bike.  So at this rate I may make up the lost ground and even break into new territory closer to my target. Going out with the dogs four times a day should help, it is a bit chilly this morning at less than 8 degrees so a cool start beckons.

[Bob Williams]

Thank you Ryan, very useful information, if a bit worrying! But helpful.

When the Thought Police arrive at your door, think -
I'm out.

[Ed P]

House Doctors are also pretty useless at cannulas as they do not do it often enough. Ambulance crews and phlebotomists are ace at it.

[StevieP]

Over the last three and a half years I have had numerous cannulas, picc line and long line. Depending on the length and regularity of the treatment they all have their advantages and disadvantages. I had a picc inserted as soon as my leukemia treatment was due to be started. My treatment was three times a week for sixteen weeks. Saved a lot of cannula insertion and holes. Needs to be cleaned regularly and this was done by the nurses prior to one of my treatments. Some people found it awkward to shower with one in. Easy, get some cheap cling film and wrap it round the line. That would usually last long enough to take a shower.

My long line was inserted prior to my bone marrow transplant which enabled everything to be given very easily. IIRC there were three colour coded connectors which were used for specific treatments. I also used it when I had a back pack with a battery pump to give me drugs over 24 hours plus. Biggest problem with long lines is the risk of infection. Mine had to be removed because of this and then I had two weeks of IV antibiotics as an in patient.

Since Christmas I have been attending the local hospital practically every other day for blood problems, (Immune thrombocytopenic purpura), and yesterday I was informed that I was also suffering from idiopathic autoimmune hemolytic anemia. I have been receiving either rituximab, blood transfusions, platelets or combos of all three, Romiplostim and self administered G-CSF injections. Because of the possible length of treatment required the consultants are looking at another picc line. This would in my case be welcomed because like many others I am running out of veins that want to come out to play.

Ryan is absolutly correct in what he says about the pump noises and signals. Beep and red lights – upstream/downstream occulsion/air bubble/drip counter not fitted correctly/end of infusion. Beep and amber lights – mains disconnected/battery low/other minor errors. (Just like the mobo beep signals).

As a tip get the flush included in the treatment time, it might save you an hour or so. Some nurses will, some won’t, depends on how many sweets and biscuits you take in for them.

Good luck and I hope it all goes well

[Author]

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