Advice please ladies.....thanks

[Joanie12]

Hi ladies, I'm grade 4 brca 2 positive. Diagnosed may/June 2017, debulked then six cycles of carbo/taxol, can dropped from 2700 to 9. Had avastin added on chemo4. And was co running on it, should have had my 18th and last dose next Tuesday. Had scan last week, can done 6 weeks ago and it has risen to 159 and "lump" (tumour) on liver. Onc said yesterday he suggests back on taxol/carbo to shrink tumour then onto a parp as long as there is evidence it has shrunk. Feel pretty p.....ed off having to start chemo again, hair loss, fatigue etc. But at least I haven't been written off. Was wondering how you ladies cope knowing what is ahead, any suggestions to improve my diet in readiness and any hope that this regime will get results. Wishing you all good days and good health xxx joanie

[Lyndy]

Hi Joanie

That’s really pants having to go straight back on chemo. Can I suggest that you get a second opinion from a specialist centre for Oc? An oncologist told me recently that treatment for oc needs to be personalised because the wretched disease doesn’t play by the normal cancer rules. Even if they say that a repeat of carbo/ taxel is the right way to go at least you know that’s the best advice you can get. There are several trials open for us BRCA ladies too..so they might suggest this as a way forward xx

[Joanie12 in reply to Lyndy]

Hi Lyndy, thanks for your reply. I do have confidence in my onc and feel he gave me good advice, don't know what else any other Dr would advise really. I did well last time on taxol/carbo getting my ca125 down low so am unsure what other treatment I could be offered. He seems to want me to hitn it with chemo and hotfoot it onto a parp so I went along with his advice. You keep well, rooting for you xx. Joanie

[Lindaura]

Dear Joanne,

I am similar to you, only BRCA1 positive, and I could not have Avastin, which doesn’t seem to work that well for lots of ladies anyway, but you went longer before your CA-125 rose, so you are still Platinum Sensitive, so Carbo/Taxol IS a good regime for you!

And the addition of the PARP inhibitor could keep you clear a lot longer.

Sadly, you have to have Chemo again, so losing your hair is in the works. Hopefully, you are starting from a pretty healthy position, so perhaps the Chemo will not be quite so hard this time.

At least that’s what I’m hoping!

I start Carbo/Caelyx a week from Monday.

I am preparing by getting my house and bills in order.

Purchasing foods I could eat last time, which were very few, Cheerios, rice crispies, soya milk, Ramen, & bottled water.

My husband and adult daughter are ready to do whatever I require in case I get as disabled as last time, when I was basically bedridden for the entire duration.

Now, I am super healthy and just have growths on my peritoneal, with a CA-125 of 260.

So, eat a lot now, get some added weight on, so you can afford to lose weight during treatment, which most of us do.

Make sure you have a support system of friends and family and have someone to hang out with during Chemo infusion.

Get Netflix on your Phone and TV so you can lay around with some entertainment. Some ladies use audio books.

And don’t worry. You will not be written off. At first it’s a shock to have a recurrence and it makes us sad, but, there are lots of new treatments coming down the pike, and many ladies simply living with cancer and getting used to the Chemo rollercoaster.

We will, too.

Best wishes,

Laura

[Joanie12 in reply to Lindaura]

Thank you for your reply, I hope you do well on treatment and get fab results,and have minimal side effects. Bed, Netflix and rest sound OK too, but moving around is necessary when you can. This disease is a bummer but we pick ourselves up again and do battle with it. Keep well, I don't post much but I read all posts and wish everyone well xx joanie

[lorraine71-Australia]

Hi Joanie, Sorry you need to go back on chemo but your Onc seems to be on top of it and you did well last time on this treatment so hope this time you do even better.

Use this time to get your strength up so you are in the best position to kick it in the butt.

I have a supplement drink each day and also make smoothies with fruit or a veg one in the blender this is handy when you don't feel like eating.

fatigue is so common with chemo my Gp has me on a low dose of steroids 5mg this is helping with my appetite ask your Onc but healthy eating is always the best.

I know it's hard to have to go back on treatment but as you did so well last time there is no reason you won't this time and remember there there are options and new trials but

hopefully you will not need to go this path.

You know if you need advice or encouragement we are here for you to help you through it.Take care Lorraine xx

[Joanie12 in reply to lorraine71-Australia]

Thank you Lorraine, I must trybto increase my appetite but smoothies sound the way to go. I do hope I'll get on with it OK, forgot how I felt last time but we battle on don't we. I hope you are doing well Lorraine and enjoying the Ozzie weather, take care, Joanie xx

[Allyb76]

Hi Joanie

Rubbish to be going back into it so soon, did they not suggest or can you ask about a different chemo to taxol, I found that by far the worst to deal with not least the hairloss..... I also had carbo/taxol followed by 18 Avastins, had nearly 9 months before first relapse and then did carbo/gemcitibine and year till second relapse now on carbo/caelyx and feel pretty good tbh, had it on Friday was out shopping yesterday and plans for today aswell they are then talking about PARP once I show good response to this current regime..... everyone copes different but no harm in asking about ather drugs to see what they say... my onc believes in moving onto a different combination once things change

Good luck with everything 👍🏻

[Joanie12 in reply to Allyb76]

Thank you ally for your response, I think I'll ring my CNS tomorrow and ask a few questions especially about the carbo/taxol and if I could try the gem. Could I ask are you brca positive, which I am?? Take care and lots of good wishes for your long remission and getting on the parp xx joanje

[Maxjor]

HI Joanie--depending on the remission time you had, is it possible to ask your onc about something other than taxol? Sometimes they advise the same treatment because it worked so well but in my case, I recurred after 7 months (I am BRCA2) so my onc and I discussed a different agent (either Carbo/Caelyx or Carbo/Gemzar) and I chose the Carbo Caelyx (he said we could use the other at a future date if needed). I did not lose my hair and I had one treatment every four weeks (instead of 18, once a week) and I found it made my quality of life better. I went from that right onto a PARP--and it has been over 6 months now (scan coming up next Monday so the frayed nerves start now!) and my ca125 was 9 when I started the PARP and has been 5 for the last three blood tests. Just another question for you to ask---in terms of treatment. I am in the U.S. and we may have more to say about options but I do think I read many from the UK having Carbo Caelyx or Carbo Gemzar as second line. I think its good to go in armed with questions and why not add this one. Wishing you luck in final decisions and treatment. oxoxox Judy

[Joanie12 in reply to Maxjor]

Hi Judy, thanks for your reply, yes I'm going to ring tomorrow and see of an alternative could be offered, the laugh is I've just been and ordered a new wig cos I dont suit my old one now as I've stopped colouring my hair!! Thanks again and good luck to you xx joanie

[Joanie12 in reply to Maxjor]

Dear major, sorry meant to add, will you let us know how your scan goes, and I wish you every good wish and prayers for Ned and can staying low. Joanie xx

[yudalef]

Hi Joanie, I wish you all the best in these coming days of second session of chemo.

what I did learn is that the influence of the carbo+Taxol in 6 treatments has substantial

different side effects on the human body.

now in Israel part of the oncologists use divided treatments in order to give the patients

the ability to stand the unbearable side effects of the full standard treatment protocol .

this enable to my non-professional judgement to save patients from serious hardships and even death before time.

Anyway I prefer second or third consulting because the data and new ways of tackling

the treatments course is growing and goes on all the time, and sometimes not all

oncologist exposes to them or can be flexible and adaptable to.

be optimistic and use lough as your everyday tool to make your life better!

Yudalef

[Joanie12 in reply to yudalef]

Hi yudalef, thank you for that information, and definitely laughter is a real tonic!! I do think new things are coming along, just wish it would hurry and save us all, keep well,Joanie xx

[coksd]

Hi I am going back on chemo too soon I am starting cisplatin alone I done carbo/taxol with avastin then 6 more avastin but ca 125s were rising. I feel great so I am taking that as a plus going into this treatment as the last time I was gravely ill I am on wheatgrass which is very nourishing I will continue that I also juice I hope to continue that too depending on taste buds I also started yoga and reflexology so I am also taking that as a plus that I will have more manageable side effects this time round. I hope I wont have hairloss but you never know I still wear wigs anyway as my own hair is not what is was I prefer it long. Def seek a second opinion my original onc deemed me platinum resistant and offered me caylex I refused this and now I will have the oncofocus test which is available for a fee but it it more targeted therapy than chemotherapy. Take Care Clare

[Joanie12 in reply to coksd]

Thanks clare for your reply, I'm going to juice and I'll check on wheatgrass too. In think because of my liver tumour it might restrict me onto other chemos or trials, however I'm going to phone tomorrow and ask a few questions. Felt a bit shell shocked on Friday when I was told about liver mass and raised can numbers. Keep well xx joanie

[cosmicsoul]

Hello,

I haven't had experience with ovarian cancer, but I do carry the BRCA2 mutation. I wanted to share my personal experience with breast cancer, and how fasting has helped me with side effects. I am hoping this information will be helpful. Fasting is difficult, but for me so worth it. Fasting puts my body into a protective state during chemo, while also making the cancer cells a lot more vulnerable to the chemo. It has been proven in lab studies at USC with rats receiving high doses of chemo. Those that fasted benefited and behaved normally, while those that did not were sluggish and eventually died. See Dr. Valter Longo studies and the documentary The Science of Fasting.

I have been fasting before my chemo treatments and the day of. I am petite and started at 106 pounds and have kept my weight stable at 105 throughout the fasting cycles. The only side affect I experienced was heavy fatigue and hair loss, but my digestion was fine, no vomiting or major nausea, bone pain, neuropathy. Food tasted good. I had the metallic taste for maybe a few hours the day after treatment and it went away, and never came back. I first had 4 cycles of the doxorubicin (Adriamycin) combined with the cyclophosphamide (Cytoxan) every 2 weeks. For the first fast (first treatment) which was challenging, I did a water fast (high PH water) - 2-3 liters a day for 48 hours before the treatment and 24 hours the day of treatment. So a total of 72 hours. For the 2nd, 3rd and 4th treatments, I did a 48 hour water fast instead, 24 hours before treatment and 24 hours the day of treatment. I did sneak in a hard boiled egg the night before treatment, since I was hungry. It did not affect the outcome with side effects, since the hard boiled egg was low in calories and fat.

Now with the second phase of chemo with Taxol for 12 weeks once a week I am doing a 36 hour fast. For example for my treatments that are on Tuesdays I will eat breakfast and lunch on Monday and fast after that drinking plenty of water. The day of treatment, I will fast, but at night, have a hard boiled egg and some nuts. As long as it's been 36 hours of fasting. So far so good. My body is holding up well. In between fasting I will eat a lot of food. What gives me an appetite is cannabis oil. I use cannabis oil without the psychoactive component called THC. I use oils and tinctures under the tongue. To help me sleep, I will take Melatonin lozenges under the tongue (5mg).

The documentary The Science of Fasting was a life saver for me. Also Google Dr. Valter Longo who heads up the research at USC discussing the benefits of fasting. Look up autophagy (recycling of cancer cells triggered by fasting).

Wishing you all the best.

[Joanie12 in reply to cosmicsoul]

Thank you very much for this information, I will give this a try!! Hoping you continue in good health, best wishes xx

[cosmicsoul in reply to Joanie12]

Sending my prayers and positive energy out to you. I wish you all the strength in the world. Inch by inch, you’ll get there. We are never alone along this journey. I’m finished with the last of the chemo taxol/carbo. Now recovering from surgery. Response to chemo was good. I forgot to mention the huge benefit of taking Claritin (allergy medicine) to eliminate bone pain side effects from the day after shot, the Nuelasta or Neupogen shot to increase white blood counts). Worked for me and others. I had no side effects from the Nuelasta.

Please feel free to ask me any questions.

Blessings.

Tatiana