TOPIC


Dealing With Recuurence

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TerritoryTuff

4 POSTS
JOINED JUL 2017
July 7, 2017 at 8:39 am

I am dealing with my first recurrence which began in September 2016  3 months after I finished my frontline treatment and maintenance .  I have been tested for BRCA 1&2 and I am negative. I  believe that I a still Platin sensitive. Was doing well until my bloods told us otherwise. I have now missed two weeks in a row which is frustrating . At least my CA125 had returned to “normal”  after the first three rounds. I am stuck at round 5. My bone marrow is screaming out  for the  chemo to stop. My husbands’ take on this is that it will be two more weeks before I would be ” eligible” for a  recurrence.

Apart from feeling tired and  not motivated to do anything much chemo has been relatively kind to me except for weight gain ( others lose weight but not me) from the steroids I think!!

I am keen to find a drug trial. As I live in Darwin this will be an obstacle to overcome if I am successful.

If anyone has any ideas regarding  dealing with  a reluctant bone marrow or potential drug trials I would be most appreciative of your advice. Best wishes from Sunny Darwin

 

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nikki

130 POSTS
JOINED JUL 2016
July 12, 2017 at 5:25 pm

You sound a bit like me!  What chemo are your on?  If had 4 recurrences and tried a few different drugs. At the moment I’m on cisplatin and caylex and stuck at the halfway point because of side effects.  My doctor has also suggested a trial but it’s so hard finding one that fits me.

I know the treatment delays are frustrating but you’re better off having a short delay to let your body recover than a big delay because your blood levels have crashed.  I was once delayed for a month because my levels crashed too low and I ended up with weekly blood and platelet transfusions.

Like I said to another forum contributor, use the time you are delayed to do stuff.  I go into a frenzy of activity trying to cram as much into my time feeling normal as possible.

Nikki

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Helen

242 POSTS
JOINED AUG 2016
July 13, 2017 at 9:32 am

Hi Carol, Like you I have delays in chemo.  I am on a carbo and Gem regime.  With my first cycle my white cells were down and I had to have a week off.  My oncologist suggested I have an injection after my second cycle of chemo to make the white cells recover quicker, however it could affect my platelets, which of course it has.  Hopefully they are back up there so I can continue with my cycle 3 chemo. Like Nikki, I consider the delays as a time to do all my normal things.  I haven’t been able to find out if there is anything we can do to help boost our blood results via diet, exercise, rest etc.

I have been on a trial and I did find it very beneficial.  I am a BRCA2 carrier and there was a trial that was suitable  for me.  It was based in Sydney and I live in Canberra, we had to travel up and down a fair bit for blood tests and appointments.  I was able to access a fund to help pay for the costs of travelling.  Most of the trials seem to be based in the bigger cities like Melbourne, Sydney and Brisbane.  My oncologist recommended I do that trial.  Have you asked your oncologist to check out trials that maybe are suitable for you?  If you do find a trial in Brisbane, make sure you check out what government assistance you can get and sometimes the companies that do the trial will assist with travelling costs.

Take care

Helen

 

 

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TerritoryTuff

4 POSTS
JOINED JUL 2017
July 14, 2017 at 7:31 pm

Thank you Helen & Nikki

I am on Carboplatin & Taxol which I had as frontline treatment. I had Avastin for 18 doses as maintainence  but I recurred within 3 months of completing this.  I am BRCA negative but I have just agreed to have my tumor samples tested for   BRCA. A long shot but if I am positive it opens up more drug trials for me. I get anoyed when I have to miss chemo but  when I stop to think about it  I am also delaying the time  between treatment and possible recurrence. My bloods were much improved and with luck I will avoid a transfusion. I have 5 treatments to go to finish.

I am ever the optomist that I will beat this monster or that a cure will be found just round the corner. We can but hope. I was a nurse in a previous life and  I can assure you that  when the boot is on the other foot I am just  like any other patient. Yesterday I had a Extravasation due to mismanagement from a nurse. Fortunately it was the Carbo not the Taxol  and apart from a bit of discomfort I am so far OK . I had my Taxol today through my port.

I will look for a drug trial and be ready to go for it if and when I have my next recurrence.

Kind regards from Darwin

Carrol

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Helen

242 POSTS
JOINED AUG 2016
July 17, 2017 at 10:33 am

Hi Carrol, That is a very good point of yours about the delays in treatment, regarding the fact that it also stretches out the chemo treatment thereby giving you more time before a recurrence may happen.  I hadn’t thought of it that way, so thank you.  I am glad your bloods were good and you have only 5 more treatments to go.  I am half way through my present regime.  What is a extravasation?   I had a reaction once to the carboplatin, so they slow down the rate that I receive it.

Keep having those positive thoughts, like you I keep hoping for a cure very soon and take care.  Helen

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LynnatCamelot

18 POSTS
JOINED SEP 2017
February 25, 2019 at 4:21 pm

So disheartening when it recurs.  I’ve had 10 months without needing treatment, but now have some nodules at the back of the abdomen, so start chemo on Wednesday with a different recipe.  This is carboplatin (which I had before) and Caelyx.  Had anyone had good results (or bad side effects) with Caelyx?  If  I respond to this after 3 months, I may be eligible for a trial of some new stuff.

At least I have discovered a small local support group which meets informally once a month in Canberra.  They seem very kind and understanding.

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Ovarian Cancer Australia Home Forums Recurrence Anything Recurrence Dealing With Recuurence

Profile picture

TerritoryTuff

4 POSTS
JOINED JUL 2017
July 7, 2017 at 8:39 am

I am dealing with my first recurrence which began in September 2016  3 months after I finished my frontline treatment and maintenance .  I have been tested for BRCA 1&2 and I am negative. I  believe that I a still Platin sensitive. Was doing well until my bloods told us otherwise. I have now missed two weeks in a row which is frustrating . At least my CA125 had returned to “normal”  after the first three rounds. I am stuck at round 5. My bone marrow is screaming out  for the  chemo to stop. My husbands’ take on this is that it will be two more weeks before I would be ” eligible” for a  recurrence.

Apart from feeling tired and  not motivated to do anything much chemo has been relatively kind to me except for weight gain ( others lose weight but not me) from the steroids I think!!

I am keen to find a drug trial. As I live in Darwin this will be an obstacle to overcome if I am successful.

If anyone has any ideas regarding  dealing with  a reluctant bone marrow or potential drug trials I would be most appreciative of your advice. Best wishes from Sunny Darwin

 

Profile picture

nikki

130 POSTS
JOINED JUL 2016
July 12, 2017 at 5:25 pm

You sound a bit like me!  What chemo are your on?  If had 4 recurrences and tried a few different drugs. At the moment I’m on cisplatin and caylex and stuck at the halfway point because of side effects.  My doctor has also suggested a trial but it’s so hard finding one that fits me.

I know the treatment delays are frustrating but you’re better off having a short delay to let your body recover than a big delay because your blood levels have crashed.  I was once delayed for a month because my levels crashed too low and I ended up with weekly blood and platelet transfusions.

Like I said to another forum contributor, use the time you are delayed to do stuff.  I go into a frenzy of activity trying to cram as much into my time feeling normal as possible.

Nikki

Profile picture

Helen

242 POSTS
JOINED AUG 2016
July 13, 2017 at 9:32 am

Hi Carol, Like you I have delays in chemo.  I am on a carbo and Gem regime.  With my first cycle my white cells were down and I had to have a week off.  My oncologist suggested I have an injection after my second cycle of chemo to make the white cells recover quicker, however it could affect my platelets, which of course it has.  Hopefully they are back up there so I can continue with my cycle 3 chemo. Like Nikki, I consider the delays as a time to do all my normal things.  I haven’t been able to find out if there is anything we can do to help boost our blood results via diet, exercise, rest etc.

I have been on a trial and I did find it very beneficial.  I am a BRCA2 carrier and there was a trial that was suitable  for me.  It was based in Sydney and I live in Canberra, we had to travel up and down a fair bit for blood tests and appointments.  I was able to access a fund to help pay for the costs of travelling.  Most of the trials seem to be based in the bigger cities like Melbourne, Sydney and Brisbane.  My oncologist recommended I do that trial.  Have you asked your oncologist to check out trials that maybe are suitable for you?  If you do find a trial in Brisbane, make sure you check out what government assistance you can get and sometimes the companies that do the trial will assist with travelling costs.

Take care

Helen

 

 

Profile picture

TerritoryTuff

4 POSTS
JOINED JUL 2017
July 14, 2017 at 7:31 pm

Thank you Helen & Nikki

I am on Carboplatin & Taxol which I had as frontline treatment. I had Avastin for 18 doses as maintainence  but I recurred within 3 months of completing this.  I am BRCA negative but I have just agreed to have my tumor samples tested for   BRCA. A long shot but if I am positive it opens up more drug trials for me. I get anoyed when I have to miss chemo but  when I stop to think about it  I am also delaying the time  between treatment and possible recurrence. My bloods were much improved and with luck I will avoid a transfusion. I have 5 treatments to go to finish.

I am ever the optomist that I will beat this monster or that a cure will be found just round the corner. We can but hope. I was a nurse in a previous life and  I can assure you that  when the boot is on the other foot I am just  like any other patient. Yesterday I had a Extravasation due to mismanagement from a nurse. Fortunately it was the Carbo not the Taxol  and apart from a bit of discomfort I am so far OK . I had my Taxol today through my port.

I will look for a drug trial and be ready to go for it if and when I have my next recurrence.

Kind regards from Darwin

Carrol

Profile picture

Helen

242 POSTS
JOINED AUG 2016
July 17, 2017 at 10:33 am

Hi Carrol, That is a very good point of yours about the delays in treatment, regarding the fact that it also stretches out the chemo treatment thereby giving you more time before a recurrence may happen.  I hadn’t thought of it that way, so thank you.  I am glad your bloods were good and you have only 5 more treatments to go.  I am half way through my present regime.  What is a extravasation?   I had a reaction once to the carboplatin, so they slow down the rate that I receive it.

Keep having those positive thoughts, like you I keep hoping for a cure very soon and take care.  Helen

Profile picture

LynnatCamelot

18 POSTS
JOINED SEP 2017
February 25, 2019 at 4:21 pm

So disheartening when it recurs.  I’ve had 10 months without needing treatment, but now have some nodules at the back of the abdomen, so start chemo on Wednesday with a different recipe.  This is carboplatin (which I had before) and Caelyx.  Had anyone had good results (or bad side effects) with Caelyx?  If  I respond to this after 3 months, I may be eligible for a trial of some new stuff.

At least I have discovered a small local support group which meets informally once a month in Canberra.  They seem very kind and understanding.