Husband doing ECX chemo following sub-total gastrectomy

illAussie

Hi guys

My husband was diagnosed with a tumor of the pylorus at the end of May & underwent a subtotal gastrectomy in Mid June, discharged from hospital on Jun 30th and started chemo treatment ECX last Tues.

He was an incredibly fit 73 year old Triathlete (current World Champion Triathlete for his age.) I noticed in Feb that he was losing weight, but thought that he had been training too hard, as he was assisting a buddy's training (who was competing in Ironman here in March), going on the long bike rides etc with her. He had also booked in to compete in the Australian Ironman here in Western Australia in Dec, (but we have cancelled that for obvious reasons!) He started asking for smaller meals & then softer meals. I suggested that he stop training so much as the calories in were less than calories out! He had been taking Reflux medication for a month or so and we thought he had an ulcer. In April, he was really ill at 2am, & I called the ambulance & he was taken to hospital. Discharged in mid morning, we went to our local doctor who gave him the breath test for Pylori. It came back as positive & was given the antibiotic mix required to cure that.

Meantime, our Doc also suggested he have an endoscopy, to check the stomach internally. He was having incredbly smelly burps/reflux that almost made ME ill! The endoscopy was done & the tumor (just called 'nodes' at that point) was discovered. Pathology confirmed a signet ring tumor almost blocking food from entering the Duodenum. So the smelly burps were the result of the undigested liquid food that couldn't exit the stomach!

We went to Sydney to see the GI Specialist Surgeon, who initially intended putting him onto 9 weeks of chemo before operating, but the next day, when doing an endoscopy and laparoscopy to check inside & outside of the stomach for breaches, he discovered that the tumor was worse than before & operated 2 days later, removing most of my husband's stomach. THe surgeon DID, however, 'increase the size' of the remaining stomach, using a piece of the small intestine & reattached the duodenum not far below this. They also removed a huge 50 lymph nodes & found cancer in only one of them, so were pretty sure that chemo would follow surgery.

The epidural pain relief for the first 5 days following surgery was brilliant. He felt no pain whatsoever. He was in Intensive care from Sat-Mon & then up to the Gastro ward. Within a couple of days, he was pulling himself up into a sitting position & out of bed walking (albeit slowly) using the drip pole and the physiotherapist as support. On the 5th day, the epidural was removed and a PCA attached to his drip (patient controlled morphine pain relief.)

He recovered very well from the surgery, tho he lost a lot of weight, as he had 11 days pre & post op without food, so withered to 50kg. He has always been thin, but this was too thin. Back home, he over ate on the first evening & was horribly ill. He resolved not to do that again! In the first week, I put a timer on to ring every hour. He ate one hour, then drank the next - having about 6-8 small meals for that first week. He put on 2kg & I was ecstatic. The next 2 weeks he only gained 1kg, but that was still good.

On his 4 week checkup since surgery, the surgeon was very happy with his recovery & we spoke with chemo & radiation guys about followup treatment. It was decided to give him ECX chemo & that radiation was not necessary. The ECX would be to 'mop up' any rogue cells that may have entered the system from that one positive lymph node, on 3 weekly sessions for 9 or 12 weeks.

He started ECX this Tuesday & is already feeling very fatigued - having a couple of rests - morning and afternoon. He has gone off his food for now, too, dropping back to 51kg. Right now, my focus is on him at least maintaining his current weight & hopefully, increasing it a bit, to withstand the rigours of chemo. Even if this mean having fries on a regular basis, or KFC Chicken Wraps with fries (something he would not normally eat, but has enjoyed in the past few weeks ....) then I am happy to go & get it for him.

He has been eating surprisingly well up til now - most 'main meals' being a good sized bowl of porridge, vege soup with pasta and evening meal, along with snacks of cheese & biscuits, pistachio & cashew nuts, pasta & sauce during the day. I was expecting him to only be able to eat food by the tablespoon! Not so - we just gradually increased some of the meals & he has even been out to Chinese Restaurant meals with triathlon friends twice! I may get some takeaway for him, as I don't want to expose him to anyone with colds or flu until he is totally over the whole regime of medication & well on the way to recovery.

So far, he hasn't had any real nausea to speak of, but i realise that it is still very early into his chemo treatment & is already taking anti nausea tabs to prevent it. We go back for the second chemo session (as long as his blood count is OK) on Aug 23. We live in a small coastal town 4hrs north of Sydney and now drive 1.5hrs north to Port Macquarie for the treatment. They have a lodge that cancer patients can stay in at a nominal cost, so that is a terrific help to us, as it is only a 200m walk to the cancer clinic. All the medical staff that we have encountered so far have been absolutely terrific. We really do believe we had the best surgeon for the operation and the staff at the cancer clinic are brilliant too. Very funny almost, tho efficient in their jobs.

I just hope & pray that he doesn't get any of the nastier side effects that ECX can give - (so far, so good) & that the 9 or 12 week courses of chemo goes quickly & successfully, so that we can then concentrate on him putting on more weight & just getting better!

He has been going for walks along the beach every morning & up til this morning, was even having a little jog ..... but today, he just felt too plain tired to jog, so only walked. With the weight loss, we'll cut out the walking for now, & just have him doing stretches & maybe some pilate exercises, to keep him toned (mentally as well, as sport has been his life for the last 50+ years.)

So far, he has been a model patient & we hope his recovery follows the same path & DOES mop up any rogue cells.

I hope that anyone else going thru this treatment has good support from family & friends and a successful outcome.

Cheers

illAussie

liveinhope

Hi,I am glad to see your
Hi,I am glad to see your husband is doing well ofter surgery and chemo.I am here for my 31year old son diagnosed with signet ring adeno on July 09.The symptoms are so insidious and mimic common ailments so its only in retrospect that we can say"That was the first symptom so many months ago".
We got immeasurable support from family and friends.We live in Poona -India,about 150kms from Bombay and our son lives with us.He's been back at work(copywriting in an ad firm
) for the last 7 months.
You and your family have my best wishes,
Nisha

livestrong_fighter

Way to go!
illAussie, great to hear your husband has great fighting spirit! Way to go!

ECX shouldn't be too hard to tolerate if first cycle passed without major side effect, therefore, I say, it looks good.

About weight, I hate to say that he probably will shed a few kilos more due to chemo and smaller stomach, at least before chemo completes. The chemo is hard on GI tract and he may not be able to absorb very well and could even have some diarrhea. Even after entire chemo, I still think it takes time to get to the point where he can really keep it stable.

About your diet, I think you are doing an excellent job by "porridge, vege soup with pasta, snacks of cheese & biscuits, pistachio & cashew nuts, pasta & sauce". I would avoid anything "fried" like KFC, chips ... ... I would also avoid anything preserved, especially meat. My wife and I did a lot of research on diet, and have learned that those two are big "NO"s, even to healthy people, not mention cancer survivors. You may also try to cut down sugar (not fructose) as much as possible in his diet. Choose "no sugar added" product whenever you can.

About exercise, I would say, follow the body's signal. If he is too tired, he might be over doing it, take it slowly. One step at a time, its a very long journey before he can re-find himself. Don't rush, take time!

Good luck on his treatment!

If you wanna discuss anything, PM or just post here would be fine!
Clicking on my ID and you will see my journey so far.

God bless!

illAussie

livestrong_fighter said:

Way to go!
illAussie, great to hear your husband has great fighting spirit! Way to go!

ECX shouldn't be too hard to tolerate if first cycle passed without major side effect, therefore, I say, it looks good.

About weight, I hate to say that he probably will shed a few kilos more due to chemo and smaller stomach, at least before chemo completes. The chemo is hard on GI tract and he may not be able to absorb very well and could even have some diarrhea. Even after entire chemo, I still think it takes time to get to the point where he can really keep it stable.

About your diet, I think you are doing an excellent job by "porridge, vege soup with pasta, snacks of cheese & biscuits, pistachio & cashew nuts, pasta & sauce". I would avoid anything "fried" like KFC, chips ... ... I would also avoid anything preserved, especially meat. My wife and I did a lot of research on diet, and have learned that those two are big "NO"s, even to healthy people, not mention cancer survivors. You may also try to cut down sugar (not fructose) as much as possible in his diet. Choose "no sugar added" product whenever you can.

About exercise, I would say, follow the body's signal. If he is too tired, he might be over doing it, take it slowly. One step at a time, its a very long journey before he can re-find himself. Don't rush, take time!

Good luck on his treatment!

If you wanna discuss anything, PM or just post here would be fine!
Clicking on my ID and you will see my journey so far.

God bless!

Thanks Nisha &
Thanks Nisha & Livestrong_fighter

That is terrific that your son is back at work, Nisha - I hope that he continues with good health from now on. Yes, the symptoms can be difficult to take seriously - everyone has a bit of indigestion after eating certain foods - but if it is on-going ...... it must be seen to & the sooner the better! I can't help thinking that if my husband had been seen 2 months earlier, they may have caught it before it got into the lymph node.

They say it will be the best part of a year (following the chemo) before my husband will be anywhere 'near normal'. Mind you, 'normal' will never be the same again! I am calling it our 'new normal'!

Livestrong_fighter - my husband had a one off dose of diarrhea yesterday, and it is the first he's experienced so far. Hopefully it will not become a persistent problem, as we have been told to contact the clinic if it does become chronic.

Believe it or not, he had some KFC with a few fries & the smoothie yesterday & thoroughly enjoyed it ..... hmm, I wonder if that contributed to the diarrhea? (The chicken was grilled, so only the fries had fat & he didn't eat that many of them.) He had had the same meal (different shop) on the previous Wed & had been OK. It is not something we'll do every day, but almost as a treat - he has never been keen on preserved meat (like continental sausages, salamis etc) so that shouldn't be a problem. Yes, they say not to eat too much fresh fruit (which breaks down to fructose eventually) and coming from an elite athletic background has always been very aware of what passed his lips! All the more why we are still mystified why he got ill in the first place!! It seems the pylori can sit dormant for many decades, before becoming active. Perhaps if he'd complained earlier, it may have been removed 'encapsulated' & not requiring chemo, as against the one bit escaping, requiring the 'mop up' chemo.

Yes, the body has been showing signs of wanting to 'slow down' and now he heeds that more. Before, he felt a bit 'weak' for having a rest, but now, takes himself to bed whenever he feels the need.

Many thanks for replying - I shall check out your ID to see your journey

Cheers

illAussie

illAussie

illAussie said:

Thanks Nisha &
Thanks Nisha & Livestrong_fighter

That is terrific that your son is back at work, Nisha - I hope that he continues with good health from now on. Yes, the symptoms can be difficult to take seriously - everyone has a bit of indigestion after eating certain foods - but if it is on-going ...... it must be seen to & the sooner the better! I can't help thinking that if my husband had been seen 2 months earlier, they may have caught it before it got into the lymph node.

They say it will be the best part of a year (following the chemo) before my husband will be anywhere 'near normal'. Mind you, 'normal' will never be the same again! I am calling it our 'new normal'!

Livestrong_fighter - my husband had a one off dose of diarrhea yesterday, and it is the first he's experienced so far. Hopefully it will not become a persistent problem, as we have been told to contact the clinic if it does become chronic.

Believe it or not, he had some KFC with a few fries & the smoothie yesterday & thoroughly enjoyed it ..... hmm, I wonder if that contributed to the diarrhea? (The chicken was grilled, so only the fries had fat & he didn't eat that many of them.) He had had the same meal (different shop) on the previous Wed & had been OK. It is not something we'll do every day, but almost as a treat - he has never been keen on preserved meat (like continental sausages, salamis etc) so that shouldn't be a problem. Yes, they say not to eat too much fresh fruit (which breaks down to fructose eventually) and coming from an elite athletic background has always been very aware of what passed his lips! All the more why we are still mystified why he got ill in the first place!! It seems the pylori can sit dormant for many decades, before becoming active. Perhaps if he'd complained earlier, it may have been removed 'encapsulated' & not requiring chemo, as against the one bit escaping, requiring the 'mop up' chemo.

Yes, the body has been showing signs of wanting to 'slow down' and now he heeds that more. Before, he felt a bit 'weak' for having a rest, but now, takes himself to bed whenever he feels the need.

Many thanks for replying - I shall check out your ID to see your journey

Cheers

illAussie

It's been a while since I
It's been a while since I updated my husband's condition. he is now on his 2nd last dose of chemo (ECX) which he has every 3 weeks. In the last few weeks, he has had the side effects from Xeloda that makes his skin almost red raw & whilst the Dimethicreme helped initially, it doesn't now. Tried Aveeno (at the Oncologists suggestion) and it doesn't work. Aloe Vera Gel works for a while, but he finds that night time is the worst time for it. He wakes up & it is burning & itchy & knows that he can't scratch it! He has red welts all over, on both arms (fore arms in particular) the upper chest & back & also his legs.

heat in any form makes it worse, so he is having cool/cold showers and stays right out of the sun. Summer is coming on here now, with the days becoming warmer every day. Being an athlete, he is frustrated that he can't get out, and doesn't want to pay the price if he does!

Does anyone have any tips on how to control the redness, itchyness & burning? All help appreciated

Thanks

illaussie

livestrong_fighter

illAussie said:

It's been a while since I
It's been a while since I updated my husband's condition. he is now on his 2nd last dose of chemo (ECX) which he has every 3 weeks. In the last few weeks, he has had the side effects from Xeloda that makes his skin almost red raw & whilst the Dimethicreme helped initially, it doesn't now. Tried Aveeno (at the Oncologists suggestion) and it doesn't work. Aloe Vera Gel works for a while, but he finds that night time is the worst time for it. He wakes up & it is burning & itchy & knows that he can't scratch it! He has red welts all over, on both arms (fore arms in particular) the upper chest & back & also his legs.

heat in any form makes it worse, so he is having cool/cold showers and stays right out of the sun. Summer is coming on here now, with the days becoming warmer every day. Being an athlete, he is frustrated that he can't get out, and doesn't want to pay the price if he does!

Does anyone have any tips on how to control the redness, itchyness & burning? All help appreciated

Thanks

illaussie

Sorry to hear the side effects,
Everyone could experience different side effect, the only advice I can give is that try different things and find which one works best for your husband. Not going out for some time is a small price to pay for speedy recovery, hanging there! God bless him!

illAussie

livestrong_fighter said:

Sorry to hear the side effects,
Everyone could experience different side effect, the only advice I can give is that try different things and find which one works best for your husband. Not going out for some time is a small price to pay for speedy recovery, hanging there! God bless him!

cornflour does the trick - feeling better now
Hi Livestrong_fighter

Many Thanks - yes, a small price to pay, indeed!

We were hoping to stop the treatment after the 3rd round of chemo, given my husband's severe skin condition, but the oncologist (even after seeing the pics) said that it was in his best interests to continue the treatment for the 4th session ..... which we did, whilst grumbling!

Then I stumbled onto the cornflour trick - it sort of coats the skin, relieving both the itch and the burn & costs like $1 a packet!!

Our neighbour's mother is also taking Xeloda & has the same condition - and she is on it for life, to control her condition, as she can't have surgery - so we have suggested she try the cornflour as well & hope it works for her.

The skin condition has pretty well been his only side effect, apart from a small bit of nausea now & then, so can't really complain.

His last blood test prior to the final chemo session was borderline for the marrow count, but another test done on the chemo day showed it almost normal again, so it went ahead. So just as well I was keeping him away from others, in case of infections ...... just 18 more days before the treatment is finished & he is on the road to recovery! Hopefully his skin will recover by Xmas, only time will tell.

Currently, he is happy staying inside, watching our Commonwealth Games!! He just loves his sport, especially athletics but we have been happily watching everything, from swimming, wrestling, running .....everything (well, maybe not synchronised swimming!!) A good way to while away the time!

Cheerio for now & stay well

illaussie