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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Jun 17, 2019 3:46 pm
by Eleda
CLUSTERINGGGHGGGGGG
JESUS CHRIST,,,, This Is awfull!!!!! My ass is burned from cleaning it :( :( :(
Bleading burned and sore, hemies :o

Ok,,,, this is the days I eat too late or am stressed otherwise
Life is ok 2 months out as long as it's take my bicarbe,,,
Not sure what u yankies call it ....


So heres my day ( hope it will help many)

1 - Stop eating at 6pm
2 - on empty stomach ( 12/14 hours fast) longer the better
Mix 10g sodium bicarbonate in roughly 20 MLS warm water ( it's discussing so less water for your own sake)
3- drink lots ( black coffee or water ,,, not capuccino ( only my observation!!!!!
STAY HOME FOR 1 HOUR.....

Presto large bowel emptied,,,

If not for this id deffo b asking to replace the illeostomy

It's my savour,,, QOL
please try it and let me know how u go
( I've had my kidney function checked and all good
In fact my CEA IS THE LOWEST since I began
I read study on tolleribility and 10g is safe ADELE X


ADELE X

Mike,,, please try this Because I know ur struggling


PRESTO,,,,

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Jun 17, 2019 4:47 pm
by prs
Jolene wrote:How do you mean prepare for it to get worse before it's finished ? I'm left with 2 more cycles and will be using a new arm for that, I'm hoping nothing too bad will happen !!

I haven't been particularly struck with fatigue as yet except for the first 3-4 days after infusion. But yes, it's definitely a bitch to get thru but mostly mentally and psychologically for me though !

Joene, my Xelox regime was eight cycles, three weeks per cycle, so with a couple of delays caused by low blood counts the whole thing lasted six months!

When I said prepare for it to get worse, I meant all the other side effects of the treatment, that for me kept increasing in intensity as the treatment progressed. Those side effects included nausea and throwing up, hand and foot syndrome, first bite lock jaw, extreme sensitivity to touching or eating anything cold, fatigue, very itchy upper body rash etc etc.

I know everybody experiences different side effects and at different levels, so hopefully you won't see too many of these!!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Jun 17, 2019 5:09 pm
by LeonW
Jolene wrote:. . . I'm left with 2 more cycles and will be using a new arm for that, I'm hoping nothing too bad will happen !!

Why would you use a new arm for these final two cycles?
Knowing that chemo is hard on the veins, I carefully alternated left and right arms for each cycle. Gives them 6 weeks to recover!

Leon

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Tue Jun 18, 2019 2:13 am
by Eleda
Sorry posted in the wrong place

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Tue Jun 18, 2019 9:54 am
by Jolene
prs wrote:
Jolene wrote:How do you mean prepare for it to get worse before it's finished ? I'm left with 2 more cycles and will be using a new arm for that, I'm hoping nothing too bad will happen !!

I haven't been particularly struck with fatigue as yet except for the first 3-4 days after infusion. But yes, it's definitely a bitch to get thru but mostly mentally and psychologically for me though !

Joene, my Xelox regime was eight cycles, three weeks per cycle, so with a couple of delays caused by low blood counts the whole thing lasted six months!

When I said prepare for it to get worse, I meant all the other side effects of the treatment, that for me kept increasing in intensity as the treatment progressed. Those side effects included nausea and throwing up, hand and foot syndrome, first bite lock jaw, extreme sensitivity to touching or eating anything cold, fatigue, very itchy upper body rash etc etc.

I know everybody experiences different side effects and at different levels, so hopefully you won't see too many of these!!


Hi PRS - thanks for the heads up !!

Did you get booster jabs to avoid low blood count ? Mine's Nivestim - done on the 3rd/4th/5th day after infusion to keep the blood count going. It gives me random chest pains though during those booster jabs day but at least it has helped my blood count stay on the border line.

I can't imagine having any cycles delay !! You gotta be so mentally strong to sit through it for 6 months !

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Tue Jun 18, 2019 9:59 am
by Jolene
LeonW wrote:
Jolene wrote:. . . I'm left with 2 more cycles and will be using a new arm for that, I'm hoping nothing too bad will happen !!

Why would you use a new arm for these final two cycles?
Knowing that chemo is hard on the veins, I carefully alternated left and right arms for each cycle. Gives them 6 weeks to recover!

Leon


Hi Leon - My left arm has already gone through 4 cycles straight on. I thought the last 2 cycle should be left to the right arm. Perhaps my 5th should be on the right arm, and the the 6th cycle back to the left leaving the left arm 6 weeks for recovery then !

I wished there was more details out there on how best to handle the IV infusion. I had some advise on the board at the beginning of my Xelox but it didn't quite click until the pain started affecting me in different ways.

I was insistent on using my left arm all the way because I didn't like the idea of my dominant hand being handicapped for a few days after infusion but I think I reached the pain threshold of my left and am now open to using my right dominant arm.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Fri Jun 21, 2019 4:43 am
by prs
Jolene wrote:Hi PRS - thanks for the heads up !!

Did you get booster jabs to avoid low blood count ? Mine's Nivestim - done on the 3rd/4th/5th day after infusion to keep the blood count going. It gives me random chest pains though during those booster jabs day but at least it has helped my blood count stay on the border line.

Hi Jolene, no I didn't get any booster shots. My oncologist said there was nothing to be done but wait for the blood counts to rebound. If I remember correctly it was the platelet count that caused him the most concern. Apparently when that count falls too low there is a danger of bleeding to death because it's the platelets that help the blood to clot.

I had blood tests at the end of every three week cycle, and if the platelet count was too low the next cycle would be delayed for a week until the count had rebounded sufficiently. My platelets did not rebound after the sixth cycle, and after three weeks delay he told me to finish out the last two cycles on Xeloda only. I remember him saying he thought the Xeloda provided 80% of the benefit of the treatment.

Of course for those reading this thread who see the Oxi infusions might only give 20% of the benefit, and are tempted to skip the infusions all together, I think it must be pointed out it may be that last 20% of the benefit that saves you from a recurrence!!!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Wed Jun 26, 2019 10:37 am
by Jolene
Hi PRS - Yes, booster jabs were given to increase my platelet count before giving it a chance to drop. (not blood count, my mistake). This is so that I can keep on taking chemo as per scheduled. I have 2 more cycles left so here is to hoping the jabs are going to keep me on schedule ! I think not every oncologist prescribe the booster jabs beforehand, my mum who was previously on folfox were given jabs ONLY when the platelet count has shown to drop very low during the bi-weekly routine blood test.

And yes - Oxi infusion when combined with Xeloda is most potent ! My oncologist used the parental analogy - Oxi is the Dad (20% - 30%) and Xeloda is the mother (70%). The child is likely to need the mother more and without the Dad, the child can still do fine but it is most powerful and potent when both parents are present in the child's life. I thought that is a rather wonderful layman analogy.

Gosh - It feels like I have come a long way to WW since my diagnosis back in November 2018. It has been only 8 months but damn, it's the hardest and most challenging 8 months of my life. The weekend waiting for results to return and determine whether I'm a WW candidate was the hardest and most agonizing !!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Fri Jul 05, 2019 10:27 am
by Jolene
Did my 5th Xelox cycle today out of 6 ! So just one more to go and I can officially be on the "real" wait and watch !

Onc reminded me many times along the way that a mop-up chemo main job is to wipe out micro spreads, however it can also suppress the tumour site temporarily providing a false sense of hope. He made sure that I understood that.

The real WW starts when the chemo is completed and weans off from the body.

Also - finally changed my infusion arm from the left to the right. Unfortunately, not too many juicy veins in my right but they managed to find one after poking around.

Fresh vein, new arm - oh man...the difference it made ! I hope it can take me through the final cycle !

How's everyone else doing ??

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Jul 28, 2019 5:29 am
by Jolene
Hi WW-ers !

I'm finally done with my final and 6th cycle of IV Oxaliplatin under the WW. Thank god ! It was 3-4 months of psychological hell for me and my spouse. I had little physical side effects apart from constipation but the cocktail of medication was surely messing with my brain I think !

I still have another 2 weeks worth of capecitabine to finish but at least no more needles and pain for a while ! Or the thought of going through another infusion round. :cry:

I had a pelvic MRI ordered while in my 4th cycle and came out looking clean so far. Blood works all going good.

Checking in with the colorectal doc in 2 weeks time and then every 3-4 months of close surveillance from thereon.

Meanwhile, trying to keep as fit and eat as well as I possibly can and leave my fate to the universe !!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Jul 28, 2019 6:31 pm
by mozart13
That's excellent Jolene.
Oxy does mess up with brain and few other things, part of the package.

Have a great summer !

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Jul 29, 2019 10:25 am
by prs
Great news Jolene!!!

Your body will now start to recover from all that treatment. It might be a slow process but it does happen, and you'll be back to normal before you know it!!! :D

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Tue Jul 30, 2019 11:02 am
by Jolene
Thank you PRS and Mozart13 ! I'm really hoping to be back to some normality. I found it difficult to concentrate on everyday work though but I am putting that down to the stress that went on over the last 6 months. My female hormones are probably all over the place too adding to the mental stress.

Just to share, my onc mentioned that the data for WW advocates are getting more substantial and balanced out with non-ww advocates over the years. The methods use to determine a WW patient are getting more established as more research data are produced.

Effectiveness data of adjuvant chemotherapy for WW patient is however still lacking and we are basically doing the chemo in unknown territory. However, I have had just about every possible tests and chemotherapy done and that we are doing the very best.

For WW-survivors - have you done anything to change your lifestyle since your diagnosis ? I am trying to reduce as much process food as I possibly can. It's not feasible to entirely cut it out altogether but hopefully I'll get there soon. I'm also trying to increase my intake of fruits and veggies. I'm hitting the gym and pool a lot more these days and invested in engaging a trainer too. Another aspect of life I'm trying to change is to be as chill as I possibly can and not sweat the small stuff. I understand that stress and frustration can weaken the immune system !

Would be great to hear what other WW-ers have done to keep up your NED status !!!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Oct 06, 2019 9:27 am
by Jolene
Just had another round of scans and I'm in the clear again ! (for now!). Yay !

Any residual chemo should have wean off by now and so I'm hoping this good news is not under the suppression of any chemo. One can only stay hopeful !

Had PET/MRI done, CT scans, sig flex and biopsy ! Apparently the whole lab facility has been thrown at me. :lol:

Another step closer to the 2 year mark and further away from recurrence hopefully !!!

Close surveillance every 3 months ! Next scan in Jan/Feb ! Fingers crossed !!

Appreciating every single living day ! Hope all WW-ers are well !

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Oct 06, 2019 12:49 pm
by lakeswim
Hi Jolene! Great news! Thrilled for you!

I have been very hesitant to post, but I just had a check too and I’m in the clear (like right now- at this moment). I really appreciate these few days just post check/scans when you can breathe easy bc you know it’s okay - at least right at this very second. The anxiety mounts as the time goes to the next check. (The “honeymoon stage“ is gone and I’m on high alert.)

I finished chemo Sept 2018 and Chemo/Rad in late Nov 2018. So it hasn’t even been a year yet since treatment ended. I assume that this next year or two is the hot time for local recurrence. I don’t take any day for granted.

As for changing anything - I have always been a healthy eater, at a good weight, and an athlete. My husband is a vegetarian and I haven’t had red meat since I was a teen. I’m not sure how to have a healthier lifestyle but I did cut out gluten and dairy. I eat kale and salmon like it’s going out of style and try to eat very little sugar. I don’t drink alcohol at all. I try to eat little in general. I am trying hard to keep an eye on my stress levels as, based on recent years, I think that had a part in my health. QiGong is fantastic for me.

I wish I had been a poor eater or overweight or inactive or something so I would have something to pin the cancer on. So my cause is a mystery (like for all of us, I guess) and I just hope I’m still not exposing myself to it. That’s my biggest worry.

Did you have radiation?

I’m curious about side effects of treatment for those (women) on W&W bc I imagine the after effects of surgery far over shadow any of the other treatment side effects.

Jolene - best wishes that you can keep the good news going! As I tell friends: so far, so good & no news is good news & I am grateful each and every day.

Lakeswim