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Anyone going through chemo at the moment?


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#1 mum2brodie

Posted 05 August 2016 - 04:07 PM

Hi I just wanted to see if there was anyone else, like myself, going through chemo.

I have Stage 4 bowel cancer and had 2/3rds of my large colon removed last October.  We have now found a family genetic link as I was the only one in my family.  To have have cancer not just once but twice.  I had Cervical cancer 20 odd years ago.

I am currently on an immune therapy trial with my chemo. And have had two scans in the last 4 months that show no active cancer.  I am in remission (however this is no cure for my stage of bowel cancer).

I am a mum of a 12 year old.  Miss diagnosed by my GP and a second GP as stress and or IBS.  Until I got so sick they finally believed me.

Cancer treatment is a lonely journey.  Especially when you don't know how long you have to live.

So I was wondering if anyone else is around so we can share the bumps and the good times.

Felicity

#2 xxyzed

Posted 05 August 2016 - 10:19 PM

I'm currently going through chemo for breast cancer. Stage 3C locally advanced considered treatable with a high risk of recurrence so am receiving aggressive treatment to minimise the recurrence risk as much as possible.
I am a mum to two boys aged 9 and 11. My husband died last year after a two year cancer battle of his own. I don't find it a lonely journey. Being on my own I have had no choice but to ask for support from friends, family and the community in general for both myself and my kids.
It must have been a huge relief to get the clean scans. It is not uncommon to live a very long time with stage 4 breast cancer. Hopefully the trial you are in goes on to have those same sort of results for bowel cancer.


#3 MrsLexiK

Posted 05 August 2016 - 10:50 PM

I have no help or advice for you but I just wanted to wish you luck. And I wanted to thank you. you wrote a post back in Jan, I had had some issues and thought (I should get it checked out at some point) likely it was your name that touched me more (I have a son with your sons name as well) but within 2 weeks my GP had me in for a colonoscopy. They did find some issues but not cancer. Thank you.

#4 mum2brodie

Posted 06 August 2016 - 01:19 PM

Oh xxyed,  Life is just so unfair my friend.  So unfair!.  
The one thing I have found is there is so much help for older people with cancer.  But not a lot of us younger ones with kiddies.  It is very lonley this journey.  As much as friends and loved ones can fill a gap.  Some days are just plain bumpy "With if days".  

I started off as 3C cancer staging.  But a scan at Christmas time found that my lymph nodes in my neck and abdomen had cancer in them after a bi-opsy.

There is so much amazing research being done and I am hopeful that I might be that percentage to beat this cancer.

My family don't like for me to talk too much about the "What ifs".  But some days they can be hard to turn off when I look at my son.

Thank you lexiK: I am glad your GP was on the ball and get you in so quickly.  My GP thought I was too young for bowel cancer and wasted 6 months or more.  Probably around 18mths.  I had been asking for tests.

But it is what it is and this is what my new normal looks like. :-)

xxyed What sort of chemo treatment are you having.  I do every two weeks. On the Wednesday I go in and have chemo in the chair via my port and then go home hooked up via my port with a 48 hours chemo take home pack.  Which makes me feel great when on it (thanks to steriods) but vile when they disconnect me.

#5 xxyzed

Posted 06 August 2016 - 09:37 PM

New normals suck. I don't blame you with the what ifs. I got over that during my husbands illness. Virtually no one with his illness dies within 2 years and he still died. There are no rules to this only best guesses which normally turn out to be wrong.
I have chemo every two weeks. Currently AC for two more rounds then Herceptin every week for 8 weeks concurrently with taxol every 2 weeks. When that's finished it is Herceptin 3 weekly until I've had a year of Herceptin. I also have 5 weeks of radiation after the taxol is finished. While chemo has been going just fine so far I have a long way to go. Each set of drugs are supposed to be easier to manage. They start with the hard ones. I still think the sheer duration will be exhausting. A 48 hr take home pack sounds horrible. I'm glad to be done and leave. The things you have to do to keep yourself alive just suck sometimes.

#6 HippyDippyBaloney

Posted 06 August 2016 - 10:00 PM

I am so sorry for what you are going through :( it sounds absolutely awful. My mum had bowel cancer, and it took a long time for her to be diagnosed to. She saw many Drs before any of them took her seriously. By the time she received a diagnosis she was told she only had months to live, she made it almost a yr however.  I was 12 at the time, this was almost 20 yrs ago now. I am sure the treatment has come a long way since then. I wish you all the best xxx

#7 LUV-MY-KIDS

Posted 06 August 2016 - 11:44 PM

mum2brodie, I did the journey with my ex DH, we were together when he was diagnosed 1st time.
He was my ex when diagnosed 2nd time with late stage 3 Bowel Cancer.  

The treatment as necessary as it is just sucks.  Sounds like you are on same treatment he was on.  I would always spend time with him when he would come home with his chemo as he found he could only cat nap while hooked up and it's tuff trying to do things lugging around the pack.  Are you having any breaks in your chemo?  He made decision every 3 months to have 1 month off so he could have some qualify time with DS.

I hope you do have someone to talk to about the what ifs and anything else you want to discuss.  My ex's family sounds similar to yours.  
Things at the end progressed very fast and as they didn't want to discuss that stuff when he was well enough. I think people just always think there is time.  We always had a good relationship so I was the one he talked to about all that stuff, and sometimes it was just random stuff but I think it helped him to have one person he could truly say what he was thinking and discuss what was on his mind.  

I hope you keep responding to the treatment.

Edited by Catlover9, 06 August 2016 - 11:46 PM.


#8 mum2brodie

Posted 15 September 2016 - 04:06 PM

Three monthly Scan day tomorrow.  Struggling with scan anxiety.

Every little niggle... I am sure its the cancer coming back.

Rarely do Bowel cancer Stage 4 go into remission.  But I have been so far for nearly 6 months.  Thanks to immune therapy.

I am only having a catscan tomorrow.  Usually my oncologist orders a PET scan too.

I am worried that a CT scan will not be enough to show if the cancer is active again.  My next scan will be before Christmas like last year.  I don't want to find out I am dying again right on Christmas.

#9 xxyzed

Posted 15 September 2016 - 04:46 PM

Scanxiety sux. And then there's the wait for the results.

If the immune therapy is a trial doesn't that mean all the rules are being rewritten so it may be possible for stage 4 to stay in remission a long time with the new treatment. I know that is now the case for breast cancer.

Is it possible to get your next scan shifted to avoid the Xmas period especially since this is a CT not a petscan. It doesn't hurt to ask. I do understand how you feel. My husband had his initial diagnosis just before Xmas, then his relapse just before the next Xmas and then his coma and eventual death just after the next Xmas. Needless to say Xmas and the new year period is no longer a happy time in our household.

Thinking of you for your scan tomorrow and hoping for no evidence of disease for a long time to come.

#10 mum2brodie

Posted 20 September 2016 - 03:52 PM

xxyzed You really have been dealt some rotten cards.

Yes, you are very right.  With the immune therapy being fairly new.  There are no rules on how long I have or if this is our cure that we are looking for.

My results came back and I am still in remission. No signs of active cancer.  So I have made one year (tomorrow) since finding out I had cancer.  Then it coming back in December being upgarded to Terminal to now being in remission.

Christmas must be such a hard time for you.

I used to adore Christmas. But last years was one I would like to forget.  I was in David Jones the other day and I just started crying.  I think its a post cancer stress from being told two days before Christmas last year.  It just creeps up sometimes in a big strong wave and brings you back to earth again.

I am thankful for every day.  How are you going?

#11 xxyzed

Posted 20 September 2016 - 05:09 PM

Fantastic news being still in remission. I really hope it continues for a long, long time.

I have started the next chemo regime in my treatment plan and am having a lot of bone and muscle pain. I haven't been able to work out a painkiller regime to get on top of it when at its worst. Fortunately it seems to be easing now but I'm not looking forward to three more cycles of this.

We went away last Xmas to try to escape all the reminders. I don't know if it helped and I'll be staying home this year as my radiation is currently scheduled to go right up to Xmas. My post traumatic stress is heaps better lately. I'm too busy trying to stay well and manage the side effects and the kids but every now and then it still manages to get the better of me.

#12 mum2brodie

Posted 29 September 2016 - 03:45 PM

I am planning on doing a holiday or something this Christmas.  My family have made no effort to help or even visit me.  My much younger brother has been a great support at times.  I have barely seen my mother or heard from her unless I make the effort so I don't.  

So I think I will just plan to go away with Hubby and my son.  

I hear you on the bone pain.  I have never experienced anything like it.  I have been trying to exercise with walking etc and I am so unfit now.  That I get bone aches and just exhausted.

#13 Hattie

Posted 29 September 2016 - 04:03 PM

Hi ladies,
Hope you don't mind me posting in here - I'm not currently going through chemo but did the hard yards almost four years ago now. I was diagnosed with stage 3C breast cancer in October 2012, had a mastectomy and lymph node removal and then dose dense chemo followed by radiation.

Your mention of muscle and bone pain brought back such awful memories. My main side effect from chemo was joint pain, which was just horrific. My oncologist tried many things (including oxycontin) to manage it, but no painkillers really worked. I know exercise is really pushed as a 'must-do' but I found that it made my pain so much worse and for longer.

This is going to sound a bit odd, but meditation may be worth a try for helping with pain management. When the drugs all failed to do anything, I started doing some meditation at home and it kind of helped as it would take me away, even for a few moments, from the pain and even a brief respite was worth it.

Tumeric is also fantastic for joint pain, you can buy it in tablet form (from health food stores mostly) or buy it fresh and make tea/mix it with juices etc. I am totally not some health food nut, but I have ongoing bone pain from taking anastrazole and the tumeric really does help.

Best wishes to both of you. It sucks so much.

Julie

#14 xxyzed

Posted 01 October 2016 - 05:26 AM

Mum to Brodie - a holiday with your hubby and son sound like a great idea.
Hattie - I'm glad you got through it.Im stage 3c as well due to extensive lymph node involvement. I definitely feel like a temporary citizen if I stop to think about the horrible prognosis. Considered treatable with a high risk of recurrence so extensive treatment has been thrown at me. Fortunately the severe pain only lasted a few days after my first taxol and Herceptin then I returned to normal. I did find movement helped but not enough. I've been given a stronger painkiller regime for this cycle so we'll see if it improves. I have started a mindfulness course the other day that goes for 8 weeks so it will be interesting to see if that brings me some peace and tranquility. So far it seems like the relaxation component of my yoga classes that I haven't gotten back to since my treatment started. I don't want to mix with too many people at the moment as its been a bad winter for colds and flus and I'm trying to stay as well as possible. I do get out a lot to catch up with friends, the kids activities or just a walk if nothing else on so my fitness while decreased I still see as recoverable and I'll step it up once radiation is finished to work through any fatigue I come down with. So far I seem to come back to normal about 6 days after each treatment.

#15 mum2brodie

Posted 06 October 2016 - 11:20 AM

I was Stage 3C to start off with as well.  Its that horrible border line.  I am looking forward to going away.  Sadly the immune therapy and all the chemo drugs burn my skin as soon as I go in the sun.  

My Onc has let me skip two chemo cycles.  I feel a bit daring lol.  But then I let my brain slip for a moment and think about having to go back to chemo when I come home.

I seriously other than shear exhaustion feel great.  Once my skin clears up and my hair grows back.  I doubt no one would know I am sick.

It takes me a good 5-6 days to start to feel some sort of normal after treatment too.  

What chemo drugs have they got you on?  Do you take it via IV or tablets.

#16 Hattie

Posted 06 October 2016 - 11:33 AM

View Postxxyzed, on 01 October 2016 - 05:26 AM, said:

Mum to Brodie - a holiday with your hubby and son sound like a great idea.
Hattie - I'm glad you got through it.Im stage 3c as well due to extensive lymph node involvement. I definitely feel like a temporary citizen if I stop to think about the horrible prognosis. Considered treatable with a high risk of recurrence so extensive treatment has been thrown at me. Fortunately the severe pain only lasted a few days after my first taxol and Herceptin then I returned to normal. I did find movement helped but not enough. I've been given a stronger painkiller regime for this cycle so we'll see if it improves. I have started a mindfulness course the other day that goes for 8 weeks so it will be interesting to see if that brings me some peace and tranquility. So far it seems like the relaxation component of my yoga classes that I haven't gotten back to since my treatment started. I don't want to mix with too many people at the moment as its been a bad winter for colds and flus and I'm trying to stay as well as possible. I do get out a lot to catch up with friends, the kids activities or just a walk if nothing else on so my fitness while decreased I still see as recoverable and I'll step it up once radiation is finished to work through any fatigue I come down with. So far I seem to come back to normal about 6 days after each treatment.

xxyzed my tumor was 8cm in diameter and I had 12 of 16 lymph nodes positive, so very extensive involvement like you. As of yesterday, I am now four years in remission. It is possible to move on from such a horrible prognosis - I am one of the very lucky pink ladies, and I hope you are too!

It is a very good idea to steer clear of groups of people during chemo. I got a cold just before my last dose and it just dragged on and on because my body couldn't fight it well enough. Other than that I managed to stay well by sticking very close to home!

Radiation is incredibly tiring, and the after-effects last about a month after your last zap. My advice is to give yourself time and be patient - it is a marathon, not a sprint!

#17 xxyzed

Posted 06 October 2016 - 03:43 PM

Two more chemo treatments to go. I didn't think I would see the end of it and I haven't really because it's still a year of immune therapy to go but that hasn't had the same side effects so somehow doesn't seem as daunting. My chemo is dose dense IV so no sooner are you through one lot it's time for the next lot. I'm not looking forward to radiation but I haven't looked forward to any of it and still seem to get through it. I'm not bad at patience but not good either. I'll have to keep the sprint/marathon in mind. I've also heard how ever long your treatment is, allow at least that much time for recovery.

Hattie - I clicked through to your Boob in a Box page. It looks like it will keep me busy for a while. Fantastic on the 4 years. I hope I make it through as well.

#18 melb101

Posted 06 October 2016 - 03:52 PM

I was diagnosed Stage 4 about 8 weeks ago with extensive mets to the liver. I'm about to start my 4th round of chemo. I've only just started to get some energy back so I've been trying to walk each morning.

It is such an overwhelming time but with 2 kids I will never stop fighting! Brodie I would be interested to know which immunotherapy trial you are on if you don't mind me asking.

#19 mum2brodie

Posted 06 October 2016 - 04:44 PM

Hi Melb101.  I am sorry to hear your news.  There is lots of Stage 4.... Stilll living and thriving.  

Can I ask what type of cancer do you have?

I have bowel cancer so I am doing the (Folfox -  5FU)
(yup thats what its called) Chemo plus Immune therapy called Vectivix or Panitumumab.  I'm not sure what cancers it good for.

Please feel free to ask away.  It is very hard if you are just coming to terms with everything.  I think I cried non stop for the first three months.

I found out I was Stage 4 two days before Christmas last year. My son is 12 years old and I am not ready for him not to have a mother.

xx Felicity

#20 melb101

Posted 06 October 2016 - 05:04 PM

Hi Felicity,
I've got bowel cancer too. My oncologist has me on heavy chemo at the moment 5fu but with both oxaliplatin and irinotecan plus avastin.
My kids are 14 and 16 so I totally understand where you are coming from.
hugs to you and wonderful you are getting great results. Xx

#21 mum2brodie

Posted 06 October 2016 - 07:06 PM

Oh Good lordy Poxy Oxy.  What state are you in?
There is an a facebook group for under 50's with bowel cancer that I am apart of.  Bowel Cancer Fighters.....

Its a great supportive group.  They understand what we are going through.

I am sorry you are facing this journey too.  It sucks big time.

I have done over 20 chemos I think I got to about 11 with Oxy. I am only just getting some of my feelings back in my hands and feet.  Avastin is great stuff too.  I was going to go on that before my Onc tried me on Vectibix.

I believe that us Stage 4ers are close to be apart of finding the cure. Or being given the opportunity to have an extended life compared to previous people.

Please feel free to PM - If your on Facebook you are welcome to add me.

xxFelicity

#22 melb101

Posted 06 October 2016 - 08:20 PM

Thanks Felicity, I'm part of that Facebook group and it helps to read all the positive stage 4 fighters! I'm in Melbourne and I like the idea of it being treated as a chronic illness.

#23 Hattie

Posted 07 October 2016 - 08:36 PM

View Postxxyzed, on 06 October 2016 - 03:43 PM, said:

Two more chemo treatments to go. I didn't think I would see the end of it and I haven't really because it's still a year of immune therapy to go but that hasn't had the same side effects so somehow doesn't seem as daunting. My chemo is dose dense IV so no sooner are you through one lot it's time for the next lot. I'm not looking forward to radiation but I haven't looked forward to any of it and still seem to get through it. I'm not bad at patience but not good either. I'll have to keep the sprint/marathon in mind. I've also heard how ever long your treatment is, allow at least that much time for recovery.

Hattie - I clicked through to your Boob in a Box page. It looks like it will keep me busy for a while. Fantastic on the 4 years. I hope I make it through as well.

xxyzed thank you - it's a point I never imagined myself getting to four years ago. Hope you find the blog helpful - feel free to pm me if you have any questions or just want to chat.

I had dose dense chemo too - and you are the only otger person I've ever come across who had it too! It is bloody hard backing up every two weeks - you get no chance to recuperate before you're back there again. Butbthe great news is that you're now on the downhill run. Best wishes to you, I'll be thinking of you!


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