Best Of
Re: Intro
@352Ruth
I recall last year a considerable amount of chat amongst the community on preparing for chemo...what to take, wear etc. Those may be hard to find since there's lots of posts on the general subject of chemo but if you go to the 'search' box on the upper right and type in key words like: chemo, prepare, what to bring, they might pull up the relevant discussions. Other than that I can offer a few tips:
Again good luck and continue to reach out as other questions arise. And don't worry too much. Most of us found it much easier than we expected and if there is any discomfort or issues the chemo staff are well trained to jump in an make things more comfortable for you. Just ensure you keep them informed on how you're feeling.
I recall last year a considerable amount of chat amongst the community on preparing for chemo...what to take, wear etc. Those may be hard to find since there's lots of posts on the general subject of chemo but if you go to the 'search' box on the upper right and type in key words like: chemo, prepare, what to bring, they might pull up the relevant discussions. Other than that I can offer a few tips:
- Be prepared for long days. Generally when you're administered two drugs, and accounting for the premeds and hydration they give you before and in between you can count on 4 or more hours. If you're only getting one drug in a treatment then usually an hour. Your doctor will tell you what drugs you'll get and the structure of your cycle so you can prepare for the amount of time you'll be in treatment
- Ask but generally yes you can eat while getting treatment. I used to pack a large bottle of spring water to stay hydrated (water at the hospital tastes awful), depending on what time my chemo something for lunch or snacks. Hate to admit it but there as always a Kit Kat in my bag. Don't pack anything that's strong smelling though. Others in treatment may find that offensive.
- Wear loose, comfortable clothing. Layering is good so you can adjust to the temperature in the chemo room. I usually wore track pants, a T, and a loose track suit top. The nurses are good to bring you a warm blanket if it's exceptionally cool.
- A good book to read, or notebook, or anything to pass the time.
- I usually feel just fine after treatment, but about half way home fatigue hits me. So I make sure my husband or someone is available to pick me up and drive me home.
Again good luck and continue to reach out as other questions arise. And don't worry too much. Most of us found it much easier than we expected and if there is any discomfort or issues the chemo staff are well trained to jump in an make things more comfortable for you. Just ensure you keep them informed on how you're feeling.
Re: Let's get started! Come and introduce yourself
Hi @Cormc
Welcome to the site and sorry to hear of your diagnosis. It is tough when we hear the news. I too was diagnosed with Stage 3C low grade serous in 2021. It was tough to take the news but am thankful they found it.
The experiences you are having have common threads to many. It is all a very tough road and it seems long at times. I found that having the half way marker helped a lot and I celebrated it silently once I got there. There is not much one can do about the weight gain and it is much better than being underweight and trying to navigate this. I finished chemo last August and just started back exercising more frequently in January at home and returned to the gym last week. It will be a slow and methodical regime to get back as exhaustion/fatigue does set in sometimes the next day or day after and then I listen to my body and rest.
Inability to sleep is a hard one and I would encourage you to speak to your team regarding that to see if there is something they can do to help you. The same goes for your anxiety, talk to your team and see what they suggest.
As each of us go through our own journey to rid ourselves of cancer, our bodies adjust accordingly. The body goes through a lot and we are left with reminders of the journeys we have taken. From a book I read recently, "After years of hard treatment, I have a body nothing like the one my mother made." I feel this is true for all of us as we go through and continue our journey. It is all in how we look at it, when we look at it as to what our thoughts are on this.
I, for one, am determined to get myself as strong as I can should a recurrence occur. I need to be strong again, whatever that means to my new surgically adjusted body.
Welcome to the site and sorry to hear of your diagnosis. It is tough when we hear the news. I too was diagnosed with Stage 3C low grade serous in 2021. It was tough to take the news but am thankful they found it.
The experiences you are having have common threads to many. It is all a very tough road and it seems long at times. I found that having the half way marker helped a lot and I celebrated it silently once I got there. There is not much one can do about the weight gain and it is much better than being underweight and trying to navigate this. I finished chemo last August and just started back exercising more frequently in January at home and returned to the gym last week. It will be a slow and methodical regime to get back as exhaustion/fatigue does set in sometimes the next day or day after and then I listen to my body and rest.
Inability to sleep is a hard one and I would encourage you to speak to your team regarding that to see if there is something they can do to help you. The same goes for your anxiety, talk to your team and see what they suggest.
As each of us go through our own journey to rid ourselves of cancer, our bodies adjust accordingly. The body goes through a lot and we are left with reminders of the journeys we have taken. From a book I read recently, "After years of hard treatment, I have a body nothing like the one my mother made." I feel this is true for all of us as we go through and continue our journey. It is all in how we look at it, when we look at it as to what our thoughts are on this.
I, for one, am determined to get myself as strong as I can should a recurrence occur. I need to be strong again, whatever that means to my new surgically adjusted body.
Re: Hair Growth
Hi @countryliving
I think anytime our hair is growing being after chemo or not, we go through a stage of it being annoying but we have to persevere and see where it goes.... why not try wearing scarfs for a bit while it is growing back.
I too lost all my hair during chemo. I had my chemo through winter so I was lucky to wear hats all the time. Now summer is here and my hair is growing back. Have been lucky that it is growing back slightly grey and fluffy n straight. I had stopped colouring it well before I was diagnosed and now even I think it looks good! Most have said they like it so I think Imwill keep it short for now.
Hang In There!
I think anytime our hair is growing being after chemo or not, we go through a stage of it being annoying but we have to persevere and see where it goes.... why not try wearing scarfs for a bit while it is growing back.
I too lost all my hair during chemo. I had my chemo through winter so I was lucky to wear hats all the time. Now summer is here and my hair is growing back. Have been lucky that it is growing back slightly grey and fluffy n straight. I had stopped colouring it well before I was diagnosed and now even I think it looks good!
Most have said they like it so I think Imwill keep it short for now.Hang In There!
Re: Let's get started! Come and introduce yourself
Lucy_BC, I know it seems frustrating but they may be getting all their ducks in a row to prepare your treatment plan. Chemotherapy is often used to shrink the cancer prior to surgery in order to make surgery more successful or even doable. It is important to have the biopsy to know the type (even ovarian cancer has several types) and grade of cancer you have in order to know what treatments/drugs will work. I found once I had a treatment plan my anxiety did lessen. I hope you will get some answers from the oncologist when you see them. Hang in there.
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Well ladies, it's going on 2 and I'm sure, for those of you experiencing the glorious day I am, everyone would like to get out and enjoy it so leaving you with this joyful picture. Hope you'll all be sharing your stickers with us soon. In the meantime, I'll be back next Thursday. And stay tuned for links to some of the upcoming activities that OCC have in store for us. It's going to be an interesting and informative spring.
Cheers until next week......
Cheers until next week......
Re: Nervous about second chemo
Hi @nadiaC
I'm so sorry to hear about chemo #2. That I can relate to as I had similar experience with Paclitaxel.
I'm so sorry to hear about chemo #2. That I can relate to as I had similar experience with Paclitaxel.
At the outset of the diagnosis I was attached to Princess Margaret in Toronto. My oncologists' plan was to do the surgery, followed by one round of Carboplatin + Paclitaxel and if that went off with no hitch install an abdominal port for future infusions that would really focus the effects of the chemo on my cancer. Sounded great at the time. So day 1 of chemo I attended the chemo clinic at PMH late morning having driven 3 hours to get there (I'd permanently moved to our farm at that point). They explained, along with infusion of some saline and drugs to prevent side effects they would start with an infusion of the paclitaxel, give me an hour break and then proceed with the carboplatin. They hooked me up and started the IV's. All was going just fine so I suggested my husband go find us some lunch while they administered the paclitaxel and we could eat together during my break so off he went.
Well, they started the paclitaxel drip and by drop 2 (about 30 seconds) my blood pressure torpedoed, my chest, neck and face went beet red, muscle spasms in my lower back and legs set me screaming to get up off the chair, and then I started blacking out. This all in a minute. Thankfully the nurse who was with me stopped the drip immediately upon my call out that something was wrong. In any event I was rushed up to acute care once they determined I wasn't having a heart attack(nothing more unnerving than seeing them wheel over the crash cart LOL) where I was put on a saline drip for 7 hours while they flushed it all out of me. My husband and I now laugh at him arriving back with Swiss Chalet in tow to find no one in my chemo chair and almost having his own heart attack thinking I'd passed away!
7 hours later we were on the road back home where my oncologist called me the next day to inform me that my reaction was so severe they couldn't even attempt another try with paclitaxel or any derivative of it so now the port infusion was out of the plan. That was really disappointing, not unlike your fear that your issue will cancel out your spot in the trial. But gal, what happens, happens and all we can do is look forward...I truly believe that. I did go back the next week to try out the carboplatin and despite shaking like a leaf waiting for all hell to break loose that went without any incident at all. And for the olaparib trial almost two years later, no one gave a thought about the paclitaxel. All they wanted to know was whether I was platinum sensitive...meaning how good was my response to the carboplatin and that one was a miracle worker for me.
My next chemos were transferred to the Kingston cancer centre as the travel back and forth to Toronto would have been a killer in itself. There, at the direction of my Toronto oncologist they gave me a combination of the carboplatin and another drug called gemcitabine which is often called gentle gem since there is are minimal side effects although it can brutal on your veins. I quickly learned to inform the nurses exactly how many drips of saline to every drip of Gem was appropriate; my first awakening of the need to be your own and strong advocate. In any event at the end of cycle 6 I was in normal CA125 range and stayed that way almost two years before we discovered my recurrence. By then, olaprib was being tested for a number of different purposes, one of which I qualified for and have now, almost another two years later been maintained on that drug.
So, although disappointing to have Plan A set aside, everything really did work out well in the long run. Right now the efficacy of the olaparib is waning so I'm likely in for some surgery in September to remove a couple of nodes as well as fix an annoying hernia I was left with. That will buy me even more time before we again look into a need for chemo. When you think about it I may have had a recurrence but I'm coming on to four years since diagnosis and still on that first recurrence with no chemo yet needed. And as they say, the longer you go between chemos the more effective it is when needed again.
I know it's all so scary. And I know how frustrating it can be when your expectations aren't met. But really the only expectation we should have is to live as long and as healthy a life as is possible...and there are lots of paths we can take to get there. No journey is without bumps. It's the end result that's important.
So hang in. Draw on your inner resilience. And know we're all rooting for you.
So hang in. Draw on your inner resilience. And know we're all rooting for you.
Re: Looking for Zejula users
I have been a participant in the Niraparib clinical trial for almost 5 years now, and even though the trial is over I remain on the same protocol as during the trial. I was a candidate for maintenance therapy after I had completed surgery and 6 rounds of standard chemo for advanced ovarian cancer. I still do not formally know whether I am on the drug or the placebo. I am 210 lbs and was started on the 300 mg dosage, within 2 weeks my platelets were very low, I wasn’t aware anything was wrong but I was was given a week off then the dose was lowered to 200mg. This time after 2 weeks I did know something was wrong, I was so weak, my hemoglobin had dropped low and I chose to have a blood transfusion. After a two week break I started on, and remain on, 100 mg. I am grateful for the near 5 years I have had and did not expect to have. I attribute this to Niraparib and the excellent support I continue to receive. I am now 5 years older than when I started this journey, so I don’t really know if my aches and pains (foot and ankle arthritis , higher blood pressure) are drug related or age related (67), but I do know I have a wonderful, enjoyable life. I continue to have a monthly appointment with my oncologist, frequent CT scans, fill out a questionnaire every 3 months and blood work monthly that reassures me that my CA125 score of 8 is a long way from the 6000+ it once was. For those of you who are wondering about the effectiveness of this drug, I feel I am living proof that it has delivered what it promised “more progression free time” and might I add an excellent quality of life.
luvlife
5
Re: Let's get started! Come and introduce yourself
Hi Everyone
Although I have been connected to this site for a time now, I haven't really made to to many comments until today!
My story is I got sick in September 2019, with pneumonia and was hospitalized for 10 days at which time my stay there, my right lung collapsed and there was 6 litres of fluid drained from my right lung. Having had an amazing Doctor, decided to test the fluid for all kinds of things that doctors do, and it was there that I was first diagnosed with what they said was Cancer growths but very early stages. After release, there were a series of further tests to be done and then it came back that I was diagnosed with Ovarian Cancer - Quite a Shock I can tell you.
Recommendations given and come two months later I started Chemo. It came as a shock at the first appointment with my oncologist as he wanted to start Chemo the next day, but both my husband and I went into shock and had to talk, so they were good enough to put it off a week. At this time they also did the Genetics Blood Test, having cancer be in the family!
My mother passed away from breast cancer when I was 12 so there is no knowing if the gen mutated with her or my grandmother on my fathers side (who also had breast cancer and passed away) many years ago. The genetics blood results came back positive and so now my sister will have the test.
During the many appointments there was this constant discussion of Ovarian Cancer and a growth on the peritoneum, which finally I was told is where the cancer growth is and not on the Ovaries It is not operable, because of the location and size, which is why Chemo was mentioned and happy to say this has shrink the growth. So positive results there. And now on Lynparza, and blood thinners due to the lung collapse.
It is amazing what the medical system can now find out and what can be done.
To all the AMAZING women out there, thanks for 'listening' and I hope that we can all Stay Strong for Each Other.
Apologies if this 'chat'seems long....
Although I have been connected to this site for a time now, I haven't really made to to many comments until today!
My story is I got sick in September 2019, with pneumonia and was hospitalized for 10 days at which time my stay there, my right lung collapsed and there was 6 litres of fluid drained from my right lung. Having had an amazing Doctor, decided to test the fluid for all kinds of things that doctors do, and it was there that I was first diagnosed with what they said was Cancer growths but very early stages. After release, there were a series of further tests to be done and then it came back that I was diagnosed with Ovarian Cancer - Quite a Shock I can tell you.
Recommendations given and come two months later I started Chemo. It came as a shock at the first appointment with my oncologist as he wanted to start Chemo the next day, but both my husband and I went into shock and had to talk, so they were good enough to put it off a week. At this time they also did the Genetics Blood Test, having cancer be in the family!
My mother passed away from breast cancer when I was 12 so there is no knowing if the gen mutated with her or my grandmother on my fathers side (who also had breast cancer and passed away) many years ago. The genetics blood results came back positive and so now my sister will have the test.
During the many appointments there was this constant discussion of Ovarian Cancer and a growth on the peritoneum, which finally I was told is where the cancer growth is and not on the Ovaries It is not operable, because of the location and size, which is why Chemo was mentioned and happy to say this has shrink the growth. So positive results there. And now on Lynparza, and blood thinners due to the lung collapse.
It is amazing what the medical system can now find out and what can be done.
To all the AMAZING women out there, thanks for 'listening' and I hope that we can all Stay Strong for Each Other.
Apologies if this 'chat'seems long....
Re: 2020 Ovarian Cancer Canada Walk of Hope: The Virtual Edition
Thank you to everyone who participated in the Walk of Hope this year. It WAS VERY DIFFERENT but it was a great day! Even though we were apart, there really was a sense of community and togetherness right across the country. As @Fearless said, the sense of being connected across the country versus in the local community was really powerful. Watch for news about the fund raising totals coming soon.
The ovarian cancer community in Canada is awesome!
The ovarian cancer community in Canada is awesome!
Re: Let's get started! Come and introduce yourself
Hello Everyone
I've been fighting and Winning ovarian cancer for 9 yrs and thought that I would introduce myself. I would love to chat or get to know anyone that wants to share. This site is so inspiring beacause while we all 'get it' we have so many different issues affecting us at so many different times. Thanks
I've been fighting and Winning ovarian cancer for 9 yrs and thought that I would introduce myself. I would love to chat or get to know anyone that wants to share. This site is so inspiring beacause while we all 'get it' we have so many different issues affecting us at so many different times. Thanks
