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Bojenka

@Strongwoman
Happy to hear your appointment has been set. And things are falling into place.  Thank you for your encouragement to write.
To recap this is my 5th year of the battle (HGS 3C) Presently I am on maintenance chemo, so normally I have an infusion every 3 weeks, but sometimes I ask for another week off. The oncologist is onboard with me, saying if it gives me better quality of life, I am in charge.  It’s not same life I had before diagnosis but close. I just need more rest and sleep which I allow myself.  

Strongwoman

Bojenka said:

@Strongwoman
Happy to hear your appointment has been set. And things are falling into place.  Thank you for your encouragement to write.
To recap this is my 5th year of the battle (HGS 3C) Presently I am on maintenance chemo, so normally I have an infusion every 3 weeks, but sometimes I ask for another week off. The oncologist is onboard with me, saying if it gives me better quality of life, I am in charge.  It’s not same life I had before diagnosis but close. I just need more rest and sleep which I allow myself.  

Thank YOU @B@Bojenka
That is amazing to see you are 5 years into this and started with Stage 3C HGSC.  I bet a lot of the Teal Sisters may find that very encouraging.  Having an infusion/treatment every 3-4 wks sounds manageable.  How are you managing on a daily basis?  What keeps you moving forward?  You are so correct, we are NOT the same people we were pre-diagnosis.  It alters our lives whether we want to admit it or not.  Some it alters more drastically and some are fortunate to have minimal changes. The mindset and outlook/perspective one has on life alters as well.
I welcome you back to the site.  I feel that some of the HGSC gals need to read some journeys like yours and to see that there is more beyond what you might find on Dr. Google.  I hope you continue to share with us.  I hope other Teal Sisters do the same that are NED or even in a manageable treatment regime.  I totally understand wanting to put it all behind you and move forward and can appreciate that.  What your wisdom or sage advice you have for others just beginning it invaluable as it is "lived" experience not some text book or internet version.  So, what do you say out there?  Want to share a little of yourselves and where you are at?  It may provide some HOPE to someone who may be struggling today, tomorrow or in the future.   I encourage you ladies to participate now and then.  It doesn't have to be lengthy.  A hello and tell us where you were and where you stand now.  I, for one, would love to know how everyone is doing that has registered on this site.  I see names and wonder just what is going on and if you are okay.  You are all in my thoughts daily.  I hope you find this post insightful to begin again and inspire some HOPE in someone's life. 

Strongwoman

GloHo said:

@Strongwoman
Honestly, I have to go pee as soon as I wake up, so staying in bed is not really an option 🤣. This is fine with me as I’m a morning person and usually just jump out of bed as soon as I wake anyway. I did not feel any benefit and have found that if I don’t get up and just stay in bed it sets me up for a lazy day. Some days that’s fine, but I prefer to get up and get some things done early morning. That frees up the rest of the day to do other things. Of course, getting up and getting things done early morning is now dependent on whether or not I want to do things. I found the need to learn how to pace myself has really thrown off my “let’s get ‘er done” behaviour!! I have also learned to accept that…so all’s good. 

It's funny isn't it @GloHo What our morning routines may have been and what they are now.  I, too, am a morning person.  I don't know why I feel I have "slept in" on any given day.  It's not like I go to work anymore and nothing pressing that says get up at "X" time.  That internal clock that tells me to, I guess. 
I enjoy the mornings. Hubby has left for work, oldest gets up and gets ready for work and leaves. That leaves the youngest in bed sleeping and me with the dogs.  Soon, he will be called back to work and it will be myself and the dogs.  I am okay with that.  I do get more accomplished in the morning and start "falling flat" (that's what I call the lack of motivation) that hits in the afternoon.  What does your day look like in general ladies?

JoanEG

@Bojenka thank you for sharing!  Stories like yours give me hope.
@Strongwoman I am still in hospital but am hoping to go home tomorrow.  My magnesium levels are still low but the dr said that seems to be how it is for now.  He is going to work on getting a plan in place with my medical onc. to see if more chemo will work to shrink the mass that is constricting my bowel.  In the meantime do you have any tips for living with a partial obstruction?

Strongwoman

GloHo said:

@Strongwoman
Exciting news. I know there is some trepidation in what you may be told, but it is better than being in that waiting void and not knowing. It is your decision and you can take as much time as needed to work through your options before making the decision that is best for you. 

Yes, a little trepidation in what I may here but it is way better than the waiting and unknown.  I am sure it will give me a lot of food for thought and goals to work towards. If I know something is happening that will have me down and out for a bit, well then I will see what I can jam pack in there before that happens. I am very curious as to what this surgeon has to say.  Will they be able to do the surgery is the biggest question of all, next the risks involved and lastly what will things look like post-surgery?  Those are biggies for me.  I will be very curious to see what the surgeon is like etc.  Above all, thankful that this appointment is available and coming soon.  Very grateful indeed, I am.   

Strongwoman

JoanEG said:

@Strongwoman I am still in hospital but am hoping to go home tomorrow.  My magnesium levels are still low but the dr said that seems to be how it is for now.  He is going to work on getting a plan in place with my medical onc. to see if more chemo will work to shrink the mass that is constricting my bowel.  In the meantime do you have any tips for living with a partial obstruction?

@JoanEG  I am happy to hear you are returning home tomorrow.  If the magnesium levels is something that will take some time to level out and the doctor is stating you can be released, run with it!  LOL
It will be interesting to see what your Med Onc says re: future chemo.  I am hoping they will hold off until you are at the 6 wk post-op mark so that you can heal in the meantime.
Yes, I have lots to say on it.  I will attach a copy of the LOW RESIDUE DIET here so you don't have to go searching for it.  It gives you guidelines as to where you may be on any given day.  I float between them all depending on how I am feeling.  Basically I let my body tell me what it needs.  If you need any helpful tips or have any questions, reach out.  I will more than happy to help you.  Be kind to yourself and allow yourself time to heal.  It is a journey to gain your strength back.  You are like me, about to recover in the spring.  It was so wonderful to be able to sit outside some days with housecoat and blankets and hat when the sun was out.  It may not have been long but the warmth of the sun and the Vit D was worth it! Also makes it easier for walking to gain strength back.  In the meantime, you get to see all the changes that emerge as spring unfolds. Truly amazing when one stops to think about it a little deeper. 
Here is the attachment.  Hope you find it helpful! 

JoanEG

@Strongwoman thank you!  I know they will provide me with guidance before I go home but I knew you would have some valuable insight as well as information. 

Lorraine5845

It seems we are all going thru some tough times . I have clear cell oc 1C discovered in 2020 (4 years now). Gone thru operation and 6 rounds of carbo taxol.  I was good for 3 years. And last year my ca125 started going up (not even by much from 10 to 23). It’s now been a year and I’ve gone thru 6 rounds of carbo caelyx which worked so so . Tried 5 rounds of immunotherapy and it did nothing. The last 6 weeks couldn’t eat and had a swollen /hard belly. I had to advance my dr apt which landed me in the hospital. I am at my lowest point both physically and mentally. They drained 5 litres of fluid which gave me some relief. Went home with the pigtail (drain) because it will surely accumulate again. Yesterday my first biopsy ever for them to see if I am eligible for a clinical trial (20 percent chance of that happening) . If not they will give me the chemo portion only Gemcitabine.  If that doesn’t do it they spoke about avastin+ taxol which besides losing my hair means I have a 15 percent chance of a bowel perforation and that’s the end of the line. My hopes are rapidly diminishing considering I first caught this in stage 1c and I caught it again last year when my ca125 was just 23 (which is still normal range).   All I know is I feel my cancer and the pain that goes with it. My energy is at its lowest. I lost over 16 pounds in 6 weeks which doesn’t help. I’ve never felt so useless in my life.  Maybe I should consider myself lucky for the remission I had in between.  

BellaDonna1959

@Bojenka What is your maintenance cocktail?  I am on Taxol and Avastin added every 2nd infusion.  I was on weekly Taxol and asked for a week off per month recently to feel better.  I was diagnosed in Feb 2022 and told I was inoperable, incurable and terminal within months most likely due to being Platinum refractory.  Cabo didn't work for me.  However, I got onto the maintenance cocktail, changed everything in my life that mattered and have outlasted the doomsday prediction by almost 2 years!  Never give up and never stop advocating for ourselves.  

BellaDonna1959

@ Strongwoman have you tried upping magnesium through Epsom Salt soaks or baths? 

BellaDonna1959

@Lorraine5845 I have been on T & A for over a year and my hair actually grew back after losing it during the Cabo experiment that made it fall out.  It might not fall out for you too.  It's worked really well for me as a maintenance cocktail. 

Bojenka

@BellaDonna1959 I am on cistplatin after 4 years of Carbo/Taxol to which I had a reaction finally in November last year.  Even though the oncologist says its a harsher drug, (I get one extra day of the steroids)  Little less energy but not bad overall all. I am able to walk with my girlfriends, travel on short trips with my sister.  

Strongwoman

Lorraine5845 said:

It seems we are all going thru some tough times . I have clear cell oc 1C discovered in 2020 (4 years now). Gone thru operation and 6 rounds of carbo taxol.  I was good for 3 years. And last year my ca125 started going up (not even by much from 10 to 23). It’s now been a year and I’ve gone thru 6 rounds of carbo caelyx which worked so so . Tried 5 rounds of immunotherapy and it did nothing. The last 6 weeks couldn’t eat and had a swollen /hard belly. I had to advance my dr apt which landed me in the hospital. I am at my lowest point both physically and mentally. They drained 5 litres of fluid which gave me some relief. Went home with the pigtail (drain) because it will surely accumulate again. Yesterday my first biopsy ever for them to see if I am eligible for a clinical trial (20 percent chance of that happening) . If not they will give me the chemo portion only Gemcitabine.  If that doesn’t do it they spoke about avastin+ taxol which besides losing my hair means I have a 15 percent chance of a bowel perforation and that’s the end of the line. My hopes are rapidly diminishing considering I first caught this in stage 1c and I caught it again last year when my ca125 was just 23 (which is still normal range).   All I know is I feel my cancer and the pain that goes with it. My energy is at its lowest. I lost over 16 pounds in 6 weeks which doesn’t help. I’ve never felt so useless in my life.  Maybe I should consider myself lucky for the remission I had in between.  

@Lorraine5845 Thank you for sharing your journey with us all.  I can sense your feelings of lowness in your story and your words.  It sounds like a lot to have persevered through. I know we don't like to discuss certain things due to the darkness of the topic. They do however need to be discussed. Have you spoken to anyone regarding what you want?  What is the quality of life you want to have?  Do you have a palliative doctor or can you ask for one?  I am thankful daily for mine.  She keeps what my wishes are in mind as I hit the roadblocks along the way.  I, personally, know I don't want certain things and where my line is.  Do you know where yours is?
What is being done to mitigate your pain and have you let them know the pain is worsening?  Getting on top of pain before it crescendos to a crisis is the key. It sounds like you are getting close to one by the words you wrote.  Experiencing the ascites is difficult and very uncomfortable from what I have heard from others.  Knowing one is losing weight rapidly is hard too.  How is your appetite and is there anything you can do there to help?  If you are in pain, not eating and very uncomfortable that would equal feeling really low.  I do sincerely wish that there is some resolution for you soon.  I am here for whatever you need or want to talk about. 
Your comment "maybe I should consider myself lucky for the remission I had in between", hit me.  I feel it isn't "luck" or that one should feel "lucky".  I look at my brief remission as a time to LIVE and ENJOY and I did do that.  I made memories with family and friends in that time as well.  I had no idea how short or how long mine would be.  I am thankful daily for having that time to be able to look back fondly on those times.  I am positive you did some things while you felt well.  Brief or short....it is still time not spent on thinking about our conditions 24/7.   
If you need any resources to help you through this time, let me know as well.  We as a community are here for you and you will NOT walk this part of your journey alone.  You have all of us right here beside you to help you and find strength to carry on.....as long as you want to.  
Thank you for being courageous, vulnerable and honest in sharing your journey with all of us. That you feel it is a safe space to do so.  Strength and kindness is what I am sending you today. 

Strongwoman

Bojenka said:

@BellaDonna1959 I am on cistplatin after 4 years of Carbo/Taxol to which I had a reaction finally in November last year.  Even though the oncologist says its a harsher drug, (I get one extra day of the steroids)  Little less energy but not bad overall all. I am able to walk with my girlfriends, travel on short trips with my sister.  

That is so nice to hear you are walking with your girlfriends and able to travel with your sister for short trips.  Even if they leave you fatigued either later that day or the day after, it IS worth it, isn't it?  Cherish those things.  I do. One never knows if a day will come that we are unable to.
  

Strongwoman

BellaDonna1959 said:

@ Strongwoman have you tried upping magnesium through Epsom Salt soaks or baths? 

@BellaDonna1959 No I have not.  I am not experiencing any issues with my magnesium either, that is @JoanEG  She has recently had major surgery and won't be able to have a bath yet.  It is a great idea and thought to shelve for when she is able to though. Thank you for the suggestion. 

Strongwoman

JoanEG said:

@Strongwoman thank you!  I know they will provide me with guidance before I go home but I knew you would have some valuable insight as well as information. 

I sure hope they do. If not, there is a lot of info there that will help you.  
Sure hope you have a smile on your face with the thought of going home tomorrow.  
As they say in the commercials "Start the car, start the car........"  LOL

melissa

Lorraine5845

@Strongwoman. I have both a palliative dr and a phsychologist + a great husband and 2 daughters and the rest of my family that’s helping me thru this. I had 20 people visiting me in the hospital every day. Family that’s in my life every day. But it’s just in some moments it’s your mind that’s your worse enemy. And the pain doesn’t help.  I am on Tylenol and dilaudid (find it doesn’t do very much) .  But sometimes I let the pain get too far before I medicate. And that’s on me. (I always tried to stay away from pills (pre cancer). 

Thanks for listening to me. 

Strongwoman

Lorraine5845 said:

@Strongwoman. I have both a palliative dr and a phsychologist + a great husband and 2 daughters and the rest of my family that’s helping me thru this. I had 20 people visiting me in the hospital every day. Family that’s in my life every day. But it’s just in some moments it’s your mind that’s your worse enemy. And the pain doesn’t help.  I am on Tylenol and dilaudid (find it doesn’t do very much) .  But sometimes I let the pain get too far before I medicate. And that’s on me. (I always tried to stay away from pills (pre cancer). 

Thanks for listening to me. 

That is wonderful to have such a community around you and there for you.  
The pain med, Dilaudid, do you know if you are on long acting or short acting?  I did not know there was a difference until my Palliative doctor informed me of it.  I am on long acting Dilaudid now that I take twice a day.  It initially made me fatigued and now do not experience that.  I have had to up my dose of it but taking it faithfully diminishes the pain so I am able to do things I want to do.  I, myself, have long ago let go of the "taking medication" notion.  I was not one to take it prior to this disease and have accepted that I am now.  I take a sleep aide as well or I don't think I would sleep at all.  There is so much to this disease and what our new norm morphs into.  My new norm is different from yours and so on but nonetheless, we are all our new selves because of it.   I wish you to be more comfortable, less pain and strength to get through the rough or down times.  You are right that we all have our moments and its okay to not be okay.  I am happy to hear how much support you have, you are blessed to have all that love and support. 

Strongwoman

melissa said:

Absolutely beautiful. Serene. Inspiring. 
All can melt away worries if even for a few moments.....  

Lorraine5845

@Strongwoman I remember seeing my palliative dr back last June (only time I saw her) I was in shock with the name palliative. She told them to say to the patients that she is a pain management dr …I am due to call her back because I have no clue if it’s short or long acting. And I take it once or twice a day when I could be taking it every 4-6 hours. I have to give myself a break and know that I will never be like before .  I just have to accept that 

melissa

@Lorraine5845 if the bottle says you may take it every 4-6 hrs then it is short-acting. The long acting is taken twice daily every 10 to 12 hrs

Lorraine5845

@melissa oh thank you   I didn’t know that.  Maybe I should call her back 

Strongwoman

@Lorraine5845
I would definitely give her a call and ask.
I take mine every 12 hours and have the short acting ones for breakthrough meds as needed.  Palliative doc did say it takes a couple days for the long acting ones to kick in.  Thought I should mention that too. In long run, less meds to take due to them being long acting and more relief. 

BellaDonna1959

I have found that Claritin has really helped with my leg heaviness and aching - I take one per day (non drowsy).  Also Pregabalin at the 200 mg 2 x a day dose has reduced my finger and toe tingling and numbness about 90%.  Feeling so much better without the constant pain. 

Strongwoman

@BellaDonna1959 Claritin eh?  Would not have thought of that for leg heaviness.  Interesting.  Thank you for the suggestion.  I am finding that making myself move and walk despite how they feel and how slow I start out.  I have maintain my strength if we end up doing this surgery.  Trying to go a little further every couple of days and see how I feel.  I walk with my son so no worried about anything. Plus the conversations we have are so enjoyable.  
Take care all who venture out near me in Ontario.  It is to be a blustery day and roads are to be a bit slippy. Mother Nature is telling everyone who is boss still.

GloHo

@BellaDonna1959
So nice to hear from you and that you have found a maintenance combo that works for you. Positive news for sure!! Thanks also for sharing your other tips and tricks…Claritin…interesting. 

Lorraine5845

@BellaDonna1959 4 years ago during my first set of chemo my neutrophils were low which obliged me   to inject myself with gastrofil.  That medication was giving me aches in my bones mostly leg and my family dr told me to take Claritin.  

GloHo

@Lorraine5845
Gosh…I hear you. I have been at this for 5 years and I agree, I think overcoming and dealing with the mental part of our journeys is quite difficult at times. But we seem to persevere…and continuing moving forward. I am not yet experiencing the pain associated with our disease, but appreciate the conversations on this site regarding pain meds and what’s available. I hope you are able to get on the long acting meds soon…sounds like that is exactly what you need. Sending positive vibes your way. 

GloHo

@Bojenka
Thanks for sharing your drug treatment info. How long have you been on Cisplatin now? Glad to hear that although it’s a harsher drug, your body seems to be tolerating it well. I am at the point of moving from one drug to the next and like to hear what others are taking, how it’s being tolerated and for how long. Thanks for sharing.