Round 5 EOW 1

mychemoromance.blogspot.com

This has been a very different week for me. Normally it goes constipation until Tuesday, followed with a small release and then either Wed or Thurs the big and extremely painful release. The Wed /Thurs release is usually accompanied with extreme fatigue and lots of  sleeping.

This week I had implemented a couple of strategies to overcome the constipation. A tablet called Coloxyl and  a liquid called Activlax. They appear to have worked and changed my first week a lot. It went like this. I got a little constipated on Saturday and had a small release Sunday. This has been continued each day with increasing releases from Tuesday on. Wed/Thurs were a little painful, well still painful though nowhere as bad as previously. My fatigue level also changed with a considerable less amount of fatigue. I also managed to stay awake all day both Wed and Thurs. This is a pretty good change and one I will endeavour to continue through from here on.

Current state of side affects.

Hands and Feet

Well my hands have completed their peel and are a pretty pink colour (new skin) when they aren't red (swelling). I'm guessing that any peeling from here of the new skin will be hardly noticeable as the skin is still very thin so it  just rubs off when it peels. I'll probably remove most of it either in the shower or when rubbing on the moisturiser. Either way I should have pretty pink hands for a while.

My feet however are still going through the peel stage and are a lot more painful than my hands were. I think this is due to my feet having actually toughened up a bit and so the peeling skin is thicker. The thicker and tougher the skin the longer it takes and the more it hurts. Tough skin dries, then splits, then cracks usually along straight lines with shard edges. These edges then dig-in at times to the soft new skin underneath. Anyway the front balls of my feet have peeled, now they just burn when I walk. The heels of my feet however are still peeling, so it will be painful for a while yet.

Eating and appetite.

Another change this week has been my appetite. I have wanted to eat a lot more often then usually for the first week. I'm taking all these changes as good signs. Normally this first week I eat very little, mostly soups, and loose some weight (not much, 2-3 kilos) which I then try to pick up in the next 2 weeks. This week I have attempted to eat more although I am still very limited in choice. I have a real problem with dry foods, by that I mean foods that are not oily internally. Things like chicken and surprisingly some fruits are almost inedible to me. Chicken skin however is a real winner and I can swallow it so easily. Unfortunately it is hard to make a meal with just chicken skin. I wish KFC would sell me just the original recipe skin, I'd be there every other night, ha ha.

This time around I am really hooked on milk and dairy products, although some cheeses cause me to gag. I am having at least one if not three or four milk drinks a day. So much iced coffee! Maybe that's why I have less fatigue, I'm really wired! Anyway, with decreased bad side affects I don't care. I'm also getting my protein this way.

Concerns

The only real concern I have at the moment is that during this first week, for a few days, I get a really bad pain in my middle. I can't say "chest" as it always feels like it is right through from back to front. The ache is often worst between my shoulder blades and the back of my ribs rather than in the front and chest region however it still feels like it goes right through. I'll talk this through with Niall next time and see whether it has anything to do with the Carboplatin. It will be 6 months since my last RNVG so I'll probably be getting another one between treatments 6 & 7 and that will indicate if it heart related or not. The pain is most intense on the Wed and Thurs coinciding with my worst period and it does eventually fade for the remaining period, so I think it is somehow related.

Wow I just did a preview and saw how long this was. I must be feeling a bit better or maybe there was just a lot to say. Anyway I hope you all had a very merry Christmas and stayed safe. Ours was very quite given it coincided with my worst period but that is a small price. no one seemed to mind. Signing off now, I'll keep you posted.

Round 5 Day 2

mychemoromance.blogspot.com

Things are have been very different this whole treatment series from last time. Whereas last time I had a pattern of when I knew I could eat again and when certain symptoms would occur, that hasn't been the case this time. Probably the combination of different drug and different regime for the one from last time.

Last year the first weekend after treatment was always a good one, this time not quite the same. A combination of constipation, steely mouth and tiredness have been more the pattern. Also with the continued Capecitibine rather than 2 weeks on and 1 week off week 3 is very different. There is no recovery period so appetite is the biggest issue.

Eating seems to be becoming the biggest challenge I face. While the physical symptoms such as peeling hands and feet are the biggest concern for the doctors and nurses for me it is a) when do I feel like eating and b) what do I feel like eating. It makes shopping a challenge as from 1 week to the next it changes, and there is no pattern to go with it. Something I really craved for last week is something that makes me want to through up this week, and I can't work it out until I try to eat and can't. The 2 consistent things this time seems to be milk drinks, which I like anyway so that's good, and really watery fruit like watermelon and grapes, which I also like. Every thing else becomes a suck it and see challenge.

Christmas this year will be a real challenge it is smack bang in the middle of my worst period, fun times here we come. I'll keep you posted on how it goes.

Feet update

I don't know if I said at anytime that my feet were holding up well but 2 weeks ago they started to peel and they have peeled much faster than my hands. 

I have almost completely lost the skin on the balls of my feet. 

Peeling feet

Quick update.  I didn't think my feet were as bad as my hands but this week my feet started peeling and unlike my hands it is happening fast.  It is not as painful as last year.  I think maybe because the skin is still quite thin as my feet have never really toughened up from last year so even when it peels what is peeling is thin skin. 

You can see from the photo they are peeling fast. 

Round 4 day 3

Dan it the hiccups are back. Seems to be related to being hungry. Better get some food into me.  Lookout watermelon here I come.  Woohoo. 

Round 4 day 2 update

Yesterday the hiccups returned wit a vengeance.  They started just before lunch and just kept going through most of the night.  It is not easy to go to sleep when you hiccup but surprisingly you can sleep.  It just means a bit more disturbed.  It is funny to wake up hiccuping, funny strange not haha. 

Anyway they appear to have left sometime during the night and I am free of them now. I did wake up with the worst heartburn I've had in years. Probably shouldn't be surprising. 

This is a quick update and today we are putting up the decorations while I still can. 

A PICC line.

This is a PICC line.  It is easy to connect tubes and stuff and goes directly into the vein. 

Round 4

I'm sitting here staring out the Window getting pumped again.  It has been a very strange week for me this week.  I thought that being of the dis I would feel much better, instead I have been constipated for the last couple of days and my hands drying out badly.  Very strange but as one of the nurse said, there is no rhyme nor reason to it when on these drugs.

So I had my PICC line installed at lunch time.  This is where they thread a line through a vein to somewhere close to the heart.  The advantage is the dosage doesn't run along the vein for long before it is mixed all the rest going through the heart and diluted very quickly before being distributed. They give you a local anesthetic before and the use an ultrasound to find the vein and guide the tube in.  It is supposed to be super accurate according to the nurse assisting.  Except of course for my run away veins and the doctor had 2 goes at getting it in a vein.  After which it went in ok and they verify with a chest xray. Anyway about an hour all up.  

And then the fun began. I get to the oncology unit and they plug into the port for a flush and blood flow check.  Instead blood back out of the port they get a bubbly red froth.  That got everyone here really excited.  No one had seen it before and they called on Sophie who is the PICC Queen.  There was an obvious leak in the line somewhere. It had to be on the outside of the vein to be sucking air.  Sophie is meticulous and through elimination found the whole.  With some excellent work was able to make the repair without any issues.  This has to be done quickly as the blood on the other side of the lack could coagulate and cause a blockage.  If this happened then I would have to go back and get a new  PICC inserted.  Thankfully Sophie saved the day. 

It is a beautiful sunny day this afternoon and I'm looking out to the Dandenongs.

I forgot to add that PICC means I now have to come back every week and get the dressing changed.  It also means I can't get it wet at all or I have to come back also.  It is going to be a fun 15 weeks ahead.  Lucky I decided not to start practicing for that long distance swimming thing.  HaHa.

Round 4 - not quite

Some updates

The swelling on my feet turned out to be blisters that couldn't be seen until the redness went down.  A bit of care and they are now ok.

Saw Niall this week as usual for my pre-treatment meet.  I spoke to him about the local reaction to the Carboplatin. He was also very concerned about the state of my hands,  they were very red and swollen when I saw him.  Previously i think i have said this is the Capecitabine. So I have one drug causing local reaction and another causing selling and inflammation.  Now if  I can just show something from the trastuzumab I'd get a jackpot. 

The really good news though is that the CT scan has come back showing real reduction in both the stomach and the lymphs. Excellent news as it means the treatment is working. 

Based on this Niall is reluctant to change my treatment regime,  which is fine by me! IT IS WORKING!  However because of the state of my hands he had deferred this weeks treatment until next week.  Sounds easy but it took me nearly 2 hours yesterday to rearrange things at work.  The other change is that because of the localized reaction to the Carboplatin I will get a PIC  line installed,  fitted, I'm not sure of the right term,  for my next treatment.  Basically this is a tube that will run up an artery in my arm probably into my chest somewhere so the Carboplatin can be administered without the reaction.  It gets fitted, installed next Friday and then stays in until all the treatments are complete.  Looking forward to that,  oh yeah. 

Anyway as I said it is working so I'll do whatever is necessary to finish it. 

Round 3 wk 2

A new development this week. We went to the Watsonia motor Show on Saturday and I wore a different pair of shoes. By the end of the day my feet were very swollen and sore. My left foot in particular developed a strange swelling at the top of the ball of the foot, just below the 2 toes next to the big toe. The swelling goes up towards the toes and still hasn't gone down.  It makes it very hard to walk at the moment.  The good news though is still no cracking or peeling. 

Roud 3 Eow 1

It has been a strange week,  this week.  First there was the whole arm swelling thing.  I still sometimes feel a slight pain in my wrist if I put pressure on it the wrong way.  Probably a muscle memory thing. 

Next it hasn't followed the usual pattern.  Tuesday appeared to be the start of fatigue and the other side effects like usual but then instead of the usual Wed with super fatigue and regular repeating bowel movements, it was a mild day with some fatigue and minimal other things. 

Instead Thursday turned out to be the fatigue day with other fun things.  The other strange thing was the difference in taste.  Previously from early Tuesday through to late Thursday everything tasted awful,  strongly metallic.  I ate soup only and I had to force myself to eat that. This time it wasn't as bad and I have eaten better this week. 

It would be nice if future side effects spread themselves out over the week, but who knows. 

Unfortunately not everything this week has been as mild.  My hands and feet have really swelled this week, particularly my hands.  They are at times quite painful. A very strange thing has been happening this week with my hands.  At times they come up quite purple in places, so in amongst the bright red is this deal purple colour. It seems to come and go very quickly.  I'll see if I can get a photo of it and post it.  I must remember to ask Niall about it.   As I said, a strange week this week. 

An interesting aside is that as they are very puffy and very dry I have very little grip, there is no moisture to be able to hold things.  I have an excuse now for being clumsy.  Anyway no peeling yet so I am quite thankful for that. 

Round 3

On Friday I had my 3rd treatment which turned out to be quite interesting for not good reasons. As the Carboplatin finished my arm stated to get quite a burning sensation around the point of  injection, not bad at first so I didn't say anything immediately and the flush was started.  At the end of the flush the point was burning quite a bit more and very sensitive to touch.  I told the nurse what was going on.  After a bit of discussion it was decided to continue the treatment via the other arm.

Later that day my arm started to swell around the wrist near the injection point.  It became extremely sensitive. When I showed I noticed the heart took a lot of the pain away and seemed to make it less sensitive at least for a little while.  So I put a heat pack on it most of Friday night.  The sensation add the swelling slowly disappeared during Saturday although has left a bit of a week wrist at the moment. Seems when I hold things that are heavy or dry to pull things the wrong way I get a sharp pain, so maybe the swelling isn't completely gone.

Anyway home again this week.  More books to read and movies to watch.

Round 2 EOW 3

There wasn't a lot to report during this cycle which is why I held off bogging.  Having said that in the last few days my hands and feet have become a lot more sensitive and are staying to puff up again.  They are much redder. 

Instead of Niall this week I met with Yvonne who stands in for Niall on occasions.  She is interesting and knows her stuff although without the history I didn't ask a couple of the questions I was going to ask Niall. 

What was interesting was she told me that the reddening and the drying of the skin etc was likely caused by the Capecitabine, I had thought it was the Carboplatin. So going on what Niall had told me before the n neuropathy is caused by the Carboplatin and then the peeling of the hands and feet is caused by the Capecitabine.  Which means they are separate side effects and not part of the same side effect.  I had linked them together.  Interesting what I keep finding out. 

Anyway I am here for round 3, treatment remains the same no changes. 

Round 2 week 1

I need my second treatment on Friday although that is not the story of the week.  In the lead up to my treatment I have to get a blood test.  As I had already had kmy left arm used on the week before for my RNVG I wanted to use my right arm for the test.  Unfortunately the somewhat poor sighted nurse at Dorevitch couldn't see any veins and insisted on using the same vein on my left arm as had been used the week before. 

The result as you can guess was a very ugly bruised swollen arm for mostof theweek.  See photo's below.

Other than that all things still going well.  Still none of the massive side affects like last year, although I am told the effects of the new drug are cumulative so expect it to get worse over time. 

I am still taking things very easy in this first week though and mostly just resting up.  I am only taking 7 days leave this round rather than the 9 of last time because things are going well.  It'll be 7 off and 8 on from here on in unless something dramatic happens. 

Signing off now, next transmission will be via the travel blog I hope as Donna and I had up to Merrijig on Tuesday for a couple of days.  Blog you then. 

Round 1 Week 2

mychemoromance.blogspot.com

Well folks it is now the end of week 2 for round 1. It was actually a pretty good one for me. The fatigue disappeared and mostly everything went very well. I feel good, and have been exercising again, walking anyway.

So assuming it follows the pattern it will slowly get worse but the starting point is really good so I'm hoping I'll get through this with only 5 treatments. That means I'll be done by new years hopefully. I won't count on that though until it happens.

So I will keep you all informed on how it is going next week after round 2.

Round 1 EOW1

OK, it is end of week 1 round 1 for me again. I find myself saying so far so good a lot. Compared to last time this time has so far been mild.  No huge weight loss or fluid loss or muscle loss. No desperate attempts to keep electrolytes and fluid in my body. No finger/foot tingling and definitely no peeling (although that didn't really start until after week 2 of round 2 last time).

This time I have more fatigue, it seems everything tires me out quickly. So far the solution is short snoozes which seem to do the trick. I did have a case of the squirts on Wed which seemed to fade by early Wed evening. I'm mostly concerned that the symptoms this time might be more slow on-set which means the worst is yet to come. I'm keeping my fingers crossed though and if the weekend is good then I'll be happy.

I've told work I'll be back on Wed next week and they are good with that. For now it is a waiting game to see what happens.

Round 1 day 3

A quick check in.  So far so good but I am not really expecting anything until tomorrow or Wednesday of it follows last year's pattern. 
If I feel this God tomorrow I may go see a movie. 

the full monty

you may have noticed this is coming from a different blog name. I copied all my cancer blog to this after I had been in remission for a while as it was really only for me to keep my observations about what was happening to me. However in case you want to read the full history between where I last had this blog email out and my personal observations on things happening in between you can go to the link below. It is public and requires no sign-in, just a period of boredom.

http://mychemoromance.blogspot.com/

And now for the bad news.

Saw Niall Wednesday, the results of the CT are not good.  My lymph nodes are back up,  almost 1.5 cm instead of the usual 1cm. This is almost certainly cancer related.  The only good news is that since it is over 12 months it means the cancer can be "re-challenged". This means I'm back to a full strength treatment again. 

It is not the same full strength because I still have the neuropathy.  So instead of cistplatin I'm getting carboplatin. Dosage is 520mg in 1l.   According to Niall it is as affective as the cistplatin but not as widely accepted in Australia. Anyway, as he says we have no choice due to the neuropathy.  I am still getting the Xeloda though.  I'm not sure what the side effects are this time, so wait and see. 

So here I am in oncology waiting for the full treatment.  At least this time it doesn't take all day.  About 3 hours.

I just remembered one of the pre-drugs,  it gives you ants in the pants,  and they are angry ants. Yes I am now remembering that one.  Margaret chuckles when I tell I remember that one. 

Gastroscopy 2

Update from Ahmad. 

My entrance to the stomach is distorted due to the tumor.  This could be the scar tissue or it could be the tumor.  As for a Stent it is not necessary at this stage.  When my eating becomes worse we can look at it then. 

Gastroscopy

It appears that the tumor is responsible for my eating problems.  Ahmad says stints are a possibility as is radiation.  Neither are urgent as I can still eat most foods.  He will discuss with Niall and let me know when we met next week. 
Oh well. 

Herceptin week update

Posting confirmation last Tuesday I noticed the increase in sensitivity in my fingers and tongue.  In fact it was a reminder to me that I had a Herceptin due on Fri.  It doesn't always register until the last minute on weeks where I don't have blood and Niall.

As for the sleepy Saturday thing,  interest variation on it last weekend.  Instead of Saturday I slept nearly all Friday night.  I was in bed by 9:30 and basically slept till around 7:30 next morning.  I didn't feel tired on Saturday. See what happens next time. 

Ahmad Aly

This week I saw Mr Ahmad Aly again, this time for swallowing issue.  He was really pleased to see that I was doing well.  I described my symptoms and about half way through he started smiling.  The good news is that what I have is quite common and it is most likely scar tissue left over from the treatment.  It is usually treated with a balloon that stretches the affected area.  If it is really bad then a Stent can be inserted. 

Of course there is the slight chance it is the cancer back but for now I am choosing to think it is the scar tissue.  There are other reasons for the narrowing but for now it is go with the most likely. 

Update on swallowing

I had thought things had changed, as almost a week has gone by before tonight when I had me latest incident. Bummer. Still a week is better than everyday which is what it had become.

Good news from Niall

With the eating thing happening I didn't even notice to later that although Niall has booked me in for a ct he didn't mention my kidney function.  This is good news and validates my increased fluid intake strategy.  I will continue it. 

Sleepy Saturday

I slept nearly all day Saturday which was the day after my treatment.  It is interesting as Donna thinks it was the same day last time that I slept all day.  I am noting it here to keep track.  I'll see if it repeats. 

HB check

First episode since last Thursday.  Thought it might be bad today when I started lunch and it was dry and doughy.  Second last bite caused it, so not bad I guess. 

The hiccup burp continued

I saw Niall on Wed as usual and spoke with him about the hiccup burp and my eating problems is causing.  At the moment with everything else pointing at being ok he thinks it is probably unrelated but given the location of my tumor it may be.  So to be safe he has booked me in to see Ahmed Aly for a gastroscopy,  just to make sure.  So in 2 weeks I see Ahmed. 

I will keep you posted. 

Dehydration cycle

Just confirming my previous observations that in the week leading up to my treatment, the sites of my neuropathy become quite dehydrated.  To the point where, this time I can visibly see the dry skin of my fingertips.  Interesting.  I wonder if this and the hiccup burp is related? 

More hiccup burp

Sunday was not a good day for this.  Both at lunch and at dinner.  At lunch I knew as soon as I had swallowed the first chip.  At dinner it was more of a surprise while eating spaghetti. 

At lunch it took me a few goes to move the offending chip after which I was able to eat the fish and salad easily.  No more chips, they were awful anyway so no loss. 

Dinner, pretty much first go cleared it and was able to finish meal. 

Breakfast today, ok. 

Hiccup burp

I'm still having what I now call the Hiccup burp. I sometime think it is improving and then an another episode.  I've worked out that if I can quickly vomit up the bit that is stuck I can then continue. 

I did for a while have a really hot sensation up my osophigus. That has now gone so may be it is getting better. 

Oily foods are easier to eat than drier foods.  Muesli gives me burps or what passes for burps now.  It is like my burp muscle pulls tight but nothing happens.  Once now again is Ok but a couple in a row together is painful. 

I'm still eating well inspite of it which is good news.  I will talk to Niall about it when I see him next week. 

12 months in remission.

It is now 12 months since I was given the news I am in remission.  My last CT scan was clear and I should probably celebrate in someway but that is not how things are done in our family.  We'll ignore it as usual.

Of more interest is something I noticed a while ago but have been waiting to see if it was repeated.  I now know it to be a pattern as I have noticed it the last 3 cycles of treatment. 

The Pattern
In the last week of each cycle I notice my fingers and tongue start to increase sensation in particular my tongue which I notice more as a drying out sort of thing. 

Other than that I have developed this strange inability to burp in the usual manner.  It can cause me great pain at times and difficulty in swallowing at times. It is almost like I try to hiccup and burp and do neither and instead just gulp air.  I then feel really bloated and can't swallow and at best squeeze air up my oesophagus which kind of hurts and burns.  This has been going on now for about 6 weeks.  It is slowly improving and when I spoke with Niall he wanted to know if it starts to get worse but while it is improving there is probably no worries.  

I am maintaining my increased fluid intake as per my last post.  It will be interesting to see if it has any effect on my cyclic symptoms. 

Side benefits and a correction.

It is now almost 2 weeks since my leg has swollen.  This is very good news as it means that the body is still healing itself.  I had thought I had reached that point where things wouldn't improve and so it was time to live with it,  but not so.  This is good as it gives me hope that the neuropathy will also eventually heal.

I have been seeing an osteopath about my back as well as the doctor.  A side effect of the mediation appears to be a strengthening of the lower back or the core which is providing real benefit to my bank.  How? I hear you ask.  I use a meditation kneeling stool to mediate.  So I keep but because my legs and back are too tight I don't actually get down onto my haunches so I put the still a across the back of my calves and sit on it in a seating position. The core is used in this position to hold the body upright. Do this for about an hour a day and you would be surprised at how strong the core starts to become.  Still the mind and strengthen the back at the same time. 

CORRECTION .. In a previous post I said the continued Herceptin might cause kidney damage, I think I got this wrong.  The full chemo treatment may have left me with some damage, or reduced function.  What may cause damage into the future is the dye used in the CT scans, so I am now trying to drink between 2 and 3 litres of fluid a day, particularly water. This isn't that easy for someone who drank between 1 to 1.5 litres a day. Any way my kidneys seem to be functioning ok as I spend a lot of time going to the toilet.   Haha.

Recovery continues

Today was the second day in a row that my legs haven't swollen, not even a little.  It may have been happening before this but I hadn't noticed.  It certainly wasn't the case last  week.  To me this is clear sign that I am still improving.  This is great news. 

I'm now mediating between 30 mins to an hour daily.  I am visualizing my recovery. I don't know if it is in fact helping but it isn't hurting. 

9 month check-in

3 months since the last check-in so I've halved the time to do something, I think that is good.

I'm due my next CT in a couple of weeks. Again I've done something to the stomach region, but this time I am pretty good that it isn't the cancer back. I expect the CT to show that.

What is interesting is that Niall has told me that there may be some long term kidney damage from the Herceptin but it is being monitored. He has told me this as last time there was a slight drop to just below the the protocol threshold of the hospital for CT's, normally I am only just above it anyway so no big deal. What it does mean though is that I have to now take a drug prior to any CT where the ink is used. 2 tablets the night before, 2 at breakfast time, 2 for dinner and 2 for breakfast next morning. This is to protect my kidneys.

So long as the CT's all keep coming back clear I don't care.

6 monthly check in

It's now about 6 months since my last note to myself. How is it going I hear me ask? Well sometimes it is quite scary. 

First let me state I am still in remission. Last month (mar 2014) I had a regular CT. Still no sign of it. 

Now why is it scary? 

Around the time of the last CT I had pulled and torn some muscles around my ribs and abdomen. Despite regular visits to the Osteo and Myo it just wasn't feeling good. This mightn't sound scary but when the only previous symptom of cancer was abdominal aching pain caused by ulcers. Then when you have muscular abdominal pain in roughly the same place as the last lot of pain, getting a clearance from the CT becomes a priority. 

Luckily all is good. I had forgotten I had created this so I will try to get better at updating it. 

My neuropathy is still there and probably only slightly better than 6 months ago. I keep telling myself it is improving but I might have to face that it isn't. 

I'm still on Clexane for the blood, Nexium for the ulcers (gone), 3 Vit D all daily. 

I'm still under treatment getting Herceptin (trastuzamab) every 3 weeks. Donna and I ares starting to work out what that means for things like holidays and doing things. 

I've just had my 4-6 monthly RNVG. Testing the heart to make sure the Herceptin doesn't cause any problems. I'll let me know next week if all good.