Medical Status of Boardmembers

Started by Ball Hopper, December 19, 2019, 03:25:19 AM

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Rois

Great to read this - I'm learning a lot from this about cancer treatment. Your attitude is brilliant - do as much as is in your control.

Dinny Breen

Great work BH, last stretch, drive her home...r
#newbridgeornowhere

illdecide

Brilliant BH, almost there. Doing brilliant and an inspiration to anyone out there with similar illness. Chapeau...
I can swim a little but i can't fly an inch

Taylor


Denn Forever

And times passes. an Inspiration to us all, BH.
I have more respect for a man
that says what he means and
means what he says...

Ball Hopper

Coming down the final stretch on Part 1 of my treatment...just the final Chemo 8 session to go on March 31st.  I suppose everyone is or should be understanding what a task it is in trying to maintain self-isolation in the world we now live in...I got a head start on it anyway. Very important to keep with the plan, no matter how boring it is.

It was a different way to spend St. Patrick's Day for certain...infusion clinic had new rules on visitors and had deferred some procedures and treatments deemed not critical...thankfully mine went ahead on schedule.

Weight loss came in at one pound even this time round, which is excellent...total weight loss from chemo 2 on 7 Jan is now 9 lbs/4 kg total.  Chemo 6 was very easy on me, but this one was back to being a little harsher than Chemo 5.  Cold sensitivity and mouth tenderness were a bit stronger and harsher on me...but still manageable.  Fatigue hit me a lot harder than before, but the answer there is very easy with daily naps up to Saturday before feeling better and an even earlier bedtime and later getting up.

White blood cell and platelet counts closer to normal by chemo 7 test, which was good.  Glucose levels also nearer normal, if a little high.  It is all balancing out, even if at the edges.  Diet is holding up well with no loss of appetite.

Part 2 planning will start with a CT scan on 7 April and we'll take it from there depending on the results.

TV and DVD viewing taking a hit with no GAAGO or sports of any form and library closed.   Comfort from cooking shows is about as good as it gets, plus some online viewing (The Irishman up next).

My sole goal at this time is to be healthy enough for Chemo 8...I don't need any postponement of the last treatment.  I'll be going full on to keep blood levels up by having a good, balanced diet and get some walking done...this was achieved last week by mowing the lawn!  I'm not suffering too much yet and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good, which are the majority of days.

I'm very surprised and grateful to feel this well as I get ready for number 8 on 31 March.  I'll be very happy to return the pump on 2 April to signal the end of Part 1 of my treatment.

Thanks again for all the support and good wishes. 

Ball Hopper

Completed the final Chemo session last week with pump returned on 2 April.

This one hit me hardest of all...extreme fatigue for over a week, super sensitive to cold, and mouth/tongue more delicate as well.

Clinic rules changed from one visitor allowed subject to temperature being normal on Tuesday to visitor requested to stay in the car or in hallway of clinic while observing safe distancing on Thursday.

Weight loss came in at almost 5 pounds (2+ kg) this time round, which gives a total weight loss from chemo 2 on 7 Jan of 14 pounds/6 kg.  Overall, that is acceptable.

White blood cell and platelet counts very close to normal on chemo 8 test, which was excellent.  Glucose levels went higher though, indicative of diet not being strictly followed – but the good stuff helped platelets and white blood cell count, so I'm calling it a good trade-off. 

Part 2 started with a CT scan on 7 April and we'll take it from there next week depending on the results.

No extra TV/DVD viewing due to earlier bedtimes.

I'll have a few weeks before Part 2 (lighter chemo + daily radiation) starts so I'll be going full on to get strength back and put on a few pounds/kg over the Easter season.  I'm not suffering that much yet and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good, which are the majority of days.

I'm very surprised and grateful to feel this well as I get ready for Part 2.  There will be a few weeks of the 5 where I'll have a struggle, but three weeks of a battle over the six months of Parts 1 and 2 will be a small price to pay.

Next update will be a week after Part 2 starts, which will be towards the end of April.  Thanks again for all the support and good wishes. 

Hound

Great stuff Ball Hopper. Inspiring the way you are dealing with this.

You've mentioned Gaago a few times. Does that mean you are outside Ireland? Where does your treatment take place?

illdecide

Brilliant news BH, glad you're doing well. Keep us informed of your progress and stay safe from that virus with your immune system prob lower than normal...Well done and fair play to you.
I can swim a little but i can't fly an inch

johnnycool

Good stuff Ball Hopper.

wishing you all the best.

Taylor

Vital time for you now BH - keep your guard up and stay safe

tintin25

Hi, anyone ever had GERD before?  Any timescale for when it passes?

Jell 0 Biafra

You probably don't want to hear this, but it varies.

If you haven't already, try over the counter anatcids. 

If bloating is a contributing factor, you might try using activated charcoal. I've had good results with that (it absorbs gas and toxins from your system--don't take it at the same time as any other internal meds you take, or it will absorb them too).

If your symptoms persist, you might need a proton pump inhibitor med. 

https://www.healthline.com/health/gerd/proton-pump-inhibitors#1

Here in the states the main brand is prilosec, not sure what it is called in Ireland.  I used it for a while and it helped.  Didn't like the idea of being on it every day though, so I switched to Zantac.  Turns out there's a cancer issue with Zantac, so they've stopped selling that here.

The other thing you can do is look at your diet.  Cut out acidic and/or rich foods and see if that helps.

Good luck with it.

Ball Hopper

Part 2 began last Wednesday, 22 April.  Changes to clinic rules means I'll have the lighter chemo dose spread over 7 days, rather than 4.  The dose is 60% of the 5-FU in Part 1 and is spread over 168 hours in Part 2 as against 46 hours in Part 1.  No pre-meds given in Part 2 as side effects not expected at all. 

Originally, I was scheduled to get the pump on Mondays and return it on Fridays.  In order to protect clinic staff better, I was switched to a 7-day infusion, meaning only one visit a week to the infusion clinic rather than two.  It being safer for the staff is very important and the inconvenience of wearing the pump for 7 days rather than 4 is OK with me.

The radiation schedule is Mon-Fri every week for 25 sessions.  I'll finish up on 27 May if I don't miss any sessions – temperature is taken at the door and if 100F or above treatment is cancelled and you're sent home.

Weight gain came in at 5 pounds (2+ kg) this time round, which gives a total weight loss from chemo 2 on 7 Jan of 8 pounds/3.5 kg.  Good to put a few pounds on as I'll expect to lose some toward the end of May.

All blood tests that are important are back above the normal person's low threshold which was excellent news.  Glucose levels better as well, but still high, well above normal high levels.

Part 2 started with a CT scan on 7 April which showed chemo was well received with reductions in all growths...one was 20% of its original size.   Another CT Sim was used to map the radiation area and transfer that image to the radiation machine.

After about 10 of the 25 treatments I'll be expecting diarrhea/dehydration/extreme fatigue.  This will last about 3 to 4 weeks I'm told and can be severe or reasonably light.  I'll prepare for that as best I can with diet and early use of medication – no point in waiting for it to show up before taking some preventative steps.

Will update again in two weeks...which will be after 13 of the 25 radiation sessions...just over half way. 

Thanks again for all the notes and words of encouragement.



Here is some info on the radiation process that will help understand it better...disclaimer re accuracy included here... 

Intensity-Modulated Radiation Therapy (IMRT)

IMRT uses high energy x-rays (photons) or a stream of particles. When radiation is used at high doses – much higher than the amount used to obtain x-ray images – it can destroy abnormal cells that cause cancer. It does this by damaging the cell's DNA, which eventually causes the cell to die.
Because of the importance of treating the cancer but sparing healthy tissue, correct patient positions for radiation exposure are determined for accurate, effective therapeutic results. My skin was marked with permanent ink (three dots with tattoo ink – one on each hip and one a few inches below the belly button). Custom-made lead shields are used to protect healthy organs from the radiation, or the radiation fields may be shaped for your situation with special blocks inside the radiation machine.

Linear Accelerator


A medical linear accelerator (LINAC) generates the photons, or x-rays, used in IMRT. It customizes high energy x-rays or electrons to conform to a tumor's shape and destroy cancer cells while sparing surrounding normal tissue. The linear accelerator uses microwave technology (similar to that used for radar) to accelerate electrons in a part of the accelerator called the "wave guide," then allows these electrons to collide with a heavy metal target to produce high-energy x-rays. These high energy x-rays are shaped as they exit the machine to conform to the shape of the patient's tumor and the customized beam is directed to the patient's tumor. The beam is usually shaped by a multi-leaf collimator that is incorporated into the head of the machine. The beam comes out of a part of the accelerator called a gantry, which can be rotated around the patient. Radiation can be delivered to the tumor from many angles by rotating the gantry. These treatments can be designed in such a way that they destroy the cancer cells while sparing the surrounding normal tissue.

I got a form-fitted leg template which is used at the beginning – once my feet are against the end plate, they can adjust my pelvic area left or right to line up with the gantry.  I lie on my back for the entire session and the treatment table never moves.

I get radiation from 9 different angles, which helps the skin as each area gets only 11% of the total dose.  The angles are roughly 40 degrees apart, and 9 make up the full circle of 360 around me as the gantry moves all around me.

The entire radiation session each day is less than 10 minutes on the table and is completely pain-free.  I'm fortunate to live only 6 miles from the clinic, some travel a long distance for such treatment.  The radiation sessions are in the same building as the chemo infusion people, so any problems I have with the pump can be addressed between sessions if need be.


Milltown Row2

So information and with my dad just recently been given bad news this has been a great view into what he may have to go through.

None of us are getting out of here alive, so please stop treating yourself like an after thought. Ea