Ladies going through chemo - how are you doing? Or those just starting or curious

TeddyandBears_Mom

Sandy3185 said:

Radiation dr

Hi Cindi! I am happy! We went out for lunch to celebrate. For some reason I was very nervous about this visit, so it was quite a relief to find everything is OK and that I will have the port removed on Oct7th. I also live about 1, 1 ½ hours away from Tampa( in Winter Haven) but I did do my chemo at Moffitt as well as the radiation. My radiation doctor was Dr Fernandez and I like him very much. Dr Wenham referred me to him. Radiation, I just had three internal treatments, was a breeze after chemo. Of course it is the gift that keeps on giving and you have to follow the after treatment instructions to make sure scar tissue doesn't form. I hope you have a better week.  Sandy

Sandy

Thanks. That is the same doctor I will be using. Glad to hear you like him. Dr. Wenham's referral for me too. I have my first appointment with him early in November.

I will be getting the internal as well. No external was recommended thank goodness!

Not sure why they want me to go in that early since I won't get the radiation until chemo completes. Which is currently on schedule to end just before Christmas.

So, did you have an exam and get all that measurement stuff done on your first visit? Or, was it just a consultation? I have to admit, I really am dreading that part!

I will say again how happy I am for you! My sister says she always gets that uneasy feeling with every checkup. And, she has to deal with that every 3 months!

Take Care Sandy,

Cindi

Editgrl

TeddyandBears_Mom said:

Sandy

Thanks. That is the same doctor I will be using. Glad to hear you like him. Dr. Wenham's referral for me too. I have my first appointment with him early in November.

I will be getting the internal as well. No external was recommended thank goodness!

Not sure why they want me to go in that early since I won't get the radiation until chemo completes. Which is currently on schedule to end just before Christmas.

So, did you have an exam and get all that measurement stuff done on your first visit? Or, was it just a consultation? I have to admit, I really am dreading that part!

I will say again how happy I am for you! My sister says she always gets that uneasy feeling with every checkup. And, she has to deal with that every 3 months!

Take Care Sandy,

Cindi

Consultation with Radiologist

Like you, Cindi, my medical oncologist wanted to schedule me for a consult with the radiation oncologist soon.  I don't understand why so soon, either.  In any case, I have an appointment for a consult next Friday.  I am getting my questions and concerns ready.  Originally, before the surgery, my surgeon said he thought it would be chemo and brachytherapy.  After we got the pathology back, he said pelvic radiation.  

Not crazy about that idea and have lots of questions.

Sandy3185

TeddyandBears_Mom said:

Sandy

Thanks. That is the same doctor I will be using. Glad to hear you like him. Dr. Wenham's referral for me too. I have my first appointment with him early in November.

I will be getting the internal as well. No external was recommended thank goodness!

Not sure why they want me to go in that early since I won't get the radiation until chemo completes. Which is currently on schedule to end just before Christmas.

So, did you have an exam and get all that measurement stuff done on your first visit? Or, was it just a consultation? I have to admit, I really am dreading that part!

I will say again how happy I am for you! My sister says she always gets that uneasy feeling with every checkup. And, she has to deal with that every 3 months!

Take Care Sandy,

Cindi

Cindi

I did see Dr Fernandez a month or two before I completed chemo.  We just talked! LOL They scheduled another appt for the measurements as I wasn't sure if I wanted to go ahead. During the first appointment we discussed the pros and cons of radiation, what current research was saying, what exactly was done during the treatments and what the possible side effects could be. It was very informative and allowed me to build a comfortable relationship with him. Yes the treatment is embarrassing but after all we've been through, manageable. I never experienced any discomfort or pain nor were there any reactions afterward.  There are after effects later on from scarring caused by the radiation but there are ways to avoid that. I had quite a bit of trepidation about doing the radiation but ultimately decided to go forward. So far, and it has been over a year, everything seems to be OK with only minimal scarring.  Hope this helps, Sandy

Cucu me

Sandy3185 said:

Cindi

I did see Dr Fernandez a month or two before I completed chemo.  We just talked! LOL They scheduled another appt for the measurements as I wasn't sure if I wanted to go ahead. During the first appointment we discussed the pros and cons of radiation, what current research was saying, what exactly was done during the treatments and what the possible side effects could be. It was very informative and allowed me to build a comfortable relationship with him. Yes the treatment is embarrassing but after all we've been through, manageable. I never experienced any discomfort or pain nor were there any reactions afterward.  There are after effects later on from scarring caused by the radiation but there are ways to avoid that. I had quite a bit of trepidation about doing the radiation but ultimately decided to go forward. So far, and it has been over a year, everything seems to be OK with only minimal scarring.  Hope this helps, Sandy

Update after chemo #5

I had a rough one ...

still don't feel like myself after week already.

Neuropathy is definately worse, the bone pain was bad, as after #1, shooting pains in the abdomen and downer, for first time.

And a bad headache today, still does not want to go away, after I took two strong pills.

I don't know why all this.... , because is fifth in a row, because was postponed after the transfusion, who knows?

My first chemo was the worst, then 2, 3 and 4 were easier, but the fifth got me like the first...

I have one more in two weeks, I don't know if I would be able to recover after.

 

TeddyandBears_Mom

Cucu me said:

Update after chemo #5

I had a rough one ...

still don't feel like myself after week already.

Neuropathy is definately worse, the bone pain was bad, as after #1, shooting pains in the abdomen and downer, for first time.

And a bad headache today, still does not want to go away, after I took two strong pills.

I don't know why all this.... , because is fifth in a row, because was postponed after the transfusion, who knows?

My first chemo was the worst, then 2, 3 and 4 were easier, but the fifth got me like the first...

I have one more in two weeks, I don't know if I would be able to recover after.

 

Cuculigata

Darn! So sorry for your rough week! Just when we think we have a pattern and know what to expect, chemo throws us a curve ball. I hope your headache gets better. I used to get migraines so I know you are dealing with a major issue here.

You can get through this! One more to go. And, even if you have another rough round (I sure hope not) .... It will be the LAST time!

I have had the shooting pains with every treatment. Both stomach and vaginal areas.  Not for long periods of time. Just every so often.

Please don't push yourself. Get the rest you need to build your strength back up.

Sending you a big hug from FL.

Cindi

TeddyandBears_Mom

Editgrl said:

Consultation with Radiologist

Like you, Cindi, my medical oncologist wanted to schedule me for a consult with the radiation oncologist soon.  I don't understand why so soon, either.  In any case, I have an appointment for a consult next Friday.  I am getting my questions and concerns ready.  Originally, before the surgery, my surgeon said he thought it would be chemo and brachytherapy.  After we got the pathology back, he said pelvic radiation.  

Not crazy about that idea and have lots of questions.

Chris / Sandy

Chris, I think I would have even more questions and concerns just like you do.

One thing that I really don't understand is why both are needed. I asked that question but never really got an answer that made sense to me.

Because, if chemo is supposed to get rid of any hiding cancer, then why the radiation?  The answer I got was that in my case, if the cancer was to recur, it would most likely be at the vaginal cuff. And the radiation will just about eliminate that possibility.  So, of course I'm going to do it. But, I still don't get it. Maybe I do and just don't want to accept the answer?  They did tell me that one treatment doesn't negate the need for the other.

Sandy, Thanks for letting me know. At least I don't have to worry now about this first appointment! :-)

 

AWK

Cucu me said:

Update after chemo #5

I had a rough one ...

still don't feel like myself after week already.

Neuropathy is definately worse, the bone pain was bad, as after #1, shooting pains in the abdomen and downer, for first time.

And a bad headache today, still does not want to go away, after I took two strong pills.

I don't know why all this.... , because is fifth in a row, because was postponed after the transfusion, who knows?

My first chemo was the worst, then 2, 3 and 4 were easier, but the fifth got me like the first...

I have one more in two weeks, I don't know if I would be able to recover after.

 

Hang in there

As my team reminded me yesterday - the treatments are cumulative and build on each other.  So the recoveries take longer, the valleys are deeper.  But the good news continues to be that we do recover, symptoms and side effects are temporary.  It doesn't help while we feel crappy but it reminds me that we are going through a lot.  You can do this, you are almost there.  Like Cathy said - take it easy.  Be gentle with yourself.  

Hugs and prayers - Anne

AWK

TeddyandBears_Mom said:

Chris / Sandy

Chris, I think I would have even more questions and concerns just like you do.

One thing that I really don't understand is why both are needed. I asked that question but never really got an answer that made sense to me.

Because, if chemo is supposed to get rid of any hiding cancer, then why the radiation?  The answer I got was that in my case, if the cancer was to recur, it would most likely be at the vaginal cuff. And the radiation will just about eliminate that possibility.  So, of course I'm going to do it. But, I still don't get it. Maybe I do and just don't want to accept the answer?  They did tell me that one treatment doesn't negate the need for the other.

Sandy, Thanks for letting me know. At least I don't have to worry now about this first appointment! :-)

 

Let's start another thread on radiation

I see a lot of comments here and questions and they are important to share.  

Cucu me

AWK said:

Hang in there

As my team reminded me yesterday - the treatments are cumulative and build on each other.  So the recoveries take longer, the valleys are deeper.  But the good news continues to be that we do recover, symptoms and side effects are temporary.  It doesn't help while we feel crappy but it reminds me that we are going through a lot.  You can do this, you are almost there.  Like Cathy said - take it easy.  Be gentle with yourself.  

Hugs and prayers - Anne

Thanks so much

Girls, I feel so good when you post,

you are giving me power, thank you

Cucu me

Cucu me said:

Thanks so much

Girls, I feel so good when you post,

you are giving me power, thank you

Postponing chemo#6?

Is it bad if you postpone the "last" chemo?

My headache got worse and I believe my blood counts are already very low.

I won't get neulasta,I rather have another transfusion.

What do you think sisters?

I'm going to call my doctor tomorrow to see, my chemo #6 should be on October 8.

 

TeddyandBears_Mom

Cucu me said:

Postponing chemo#6?

Is it bad if you postpone the "last" chemo?

My headache got worse and I believe my blood counts are already very low.

I won't get neulasta,I rather have another transfusion.

What do you think sisters?

I'm going to call my doctor tomorrow to see, my chemo #6 should be on October 8.

 

chemo #7 postponed - Will change to #3 Round :-)

Hi All,  I posted the below on a separate thread in error.  So, copying it over here where It should have been to begin with!

Today was supposed to be my 7th weekly treatment.  However, fatigue continued to plague me and I made the decision to move to the every 3 week schedule.

The changes that we made last week with the Decadron and adding Prilosec made a huge difference on my burning stomach and acid reflux.  I wanted to make sure to note this because just that helped so much in my stomach impacts.  Now, I did have more nausea that I managed farily well with the pills.  My appetite was low and I had to be careful what kind of foods I ate and how much. 

My hope going with the standard rounds, is that I'll have more good days together and that the bad days won't be 3 Xs as bad as my weekly have been.  I'm a bit apprehensive but feel that this is going to be better for me.  I have struggled over the last two weeks with the physical limitations and the emotional issues that seem to come along with having zero energy and a shortness of breath when I tried to move around.

My doctor was quite surprised when I approached him. He said that most of his patience have done well on the weekly.  Leave it to me to rock the boat.  He was a bit concerned over the fact that I won't have chemo for the next 2 weeks and that the smaller dose I received last week won't carry me through. And, he said there is no data to determine if that is a good or bad thing.  I'm looking at it like this: My end date for chemo remains the same.  I'm getting exactly the same dosage for round 3 that I would have gotten.  Just all at once at the end of what would have been the divided up weekly.  So, after much discussion, we both agreed this was an OK approach to take.  Fingers crossed it was the right choice.

So, I am feeling very good about the next two weeks.  Looking forward to having more energy and feeling more like my old self before I get that next big chemo. I plan to enjoy every waking minute of every day!  :-)

Editgrl

TeddyandBears_Mom said:

chemo #7 postponed - Will change to #3 Round :-)

Hi All,  I posted the below on a separate thread in error.  So, copying it over here where It should have been to begin with!

Today was supposed to be my 7th weekly treatment.  However, fatigue continued to plague me and I made the decision to move to the every 3 week schedule.

The changes that we made last week with the Decadron and adding Prilosec made a huge difference on my burning stomach and acid reflux.  I wanted to make sure to note this because just that helped so much in my stomach impacts.  Now, I did have more nausea that I managed farily well with the pills.  My appetite was low and I had to be careful what kind of foods I ate and how much. 

My hope going with the standard rounds, is that I'll have more good days together and that the bad days won't be 3 Xs as bad as my weekly have been.  I'm a bit apprehensive but feel that this is going to be better for me.  I have struggled over the last two weeks with the physical limitations and the emotional issues that seem to come along with having zero energy and a shortness of breath when I tried to move around.

My doctor was quite surprised when I approached him. He said that most of his patience have done well on the weekly.  Leave it to me to rock the boat.  He was a bit concerned over the fact that I won't have chemo for the next 2 weeks and that the smaller dose I received last week won't carry me through. And, he said there is no data to determine if that is a good or bad thing.  I'm looking at it like this: My end date for chemo remains the same.  I'm getting exactly the same dosage for round 3 that I would have gotten.  Just all at once at the end of what would have been the divided up weekly.  So, after much discussion, we both agreed this was an OK approach to take.  Fingers crossed it was the right choice.

So, I am feeling very good about the next two weeks.  Looking forward to having more energy and feeling more like my old self before I get that next big chemo. I plan to enjoy every waking minute of every day!  :-)

Sorry for the postponement

but  I'm also hoping that the side efffects will be more manageable for you on the 3 week schedule.  I've been watching your progress with great interest since it was your protocol that made me consider weekly when we both started chemo.  Everyone's different and there is no way to predict, but I am optimistic that you will have more good days this way.  For me, that has allowed me lots of time to schedule a long weekend at the coast later this month, join friends for dinner or get-togethers, and just generally have a normal, "non-cancer" life for more days in between treatments than I think I would have had with weekly chemo.  Plus, I was concerned about keeping my blood counts up since I normally run in the low normal range.

So, yeah!!!  Enjoy the heck out of the next two weeks.  

Chris

Cucu me

Editgrl said:

Sorry for the postponement

but  I'm also hoping that the side efffects will be more manageable for you on the 3 week schedule.  I've been watching your progress with great interest since it was your protocol that made me consider weekly when we both started chemo.  Everyone's different and there is no way to predict, but I am optimistic that you will have more good days this way.  For me, that has allowed me lots of time to schedule a long weekend at the coast later this month, join friends for dinner or get-togethers, and just generally have a normal, "non-cancer" life for more days in between treatments than I think I would have had with weekly chemo.  Plus, I was concerned about keeping my blood counts up since I normally run in the low normal range.

So, yeah!!!  Enjoy the heck out of the next two weeks.  

Chris

don't look at it as postponement

It's just a change of the plan,and btw I like it better.

You are going to have more time to recover

and Cindi and Chris watch for those blood numbers!!!!!!!!

I'm still feeling very sick after chemo #5, the side effects are killing me.

TeddyandBears_Mom

Cucu me said:

don't look at it as postponement

It's just a change of the plan,and btw I like it better.

You are going to have more time to recover

and Cindi and Chris watch for those blood numbers!!!!!!!!

I'm still feeling very sick after chemo #5, the side effects are killing me.

Cucu and Chris

Just so that you know.... I am celebrating this change.  (I hope I am still feeling the celebration after the next round!  LOL)

And, from an emotional perspective - it sure is easier to think that I have 4 to go instead of 12!

Yep, the blood impacts are concerning for me.  That was the main reason my oncologist wanted weekly. he said he could control the blood counts better.

Cucu, do you still have a headache?! What side effects are hitting you still?  So sorry you haven't gotten relief yet. Damn it! That seems like a long time.

Chris, I think that was part of my struggle.  I really had zero personal life to enjoy things. It was all about laying around and going for chemo. And forcing myself to take a short walk every day. I just couldn't see myself doing that for 3 more months. I was losing my ability to stay positive and focused. So, decided it was time to change it up a bit.  Good luck at the radiologist tomorrow. Can't wait to hear about his input.

Cucu me

TeddyandBears_Mom said:

Cucu and Chris

Just so that you know.... I am celebrating this change.  (I hope I am still feeling the celebration after the next round!  LOL)

And, from an emotional perspective - it sure is easier to think that I have 4 to go instead of 12!

Yep, the blood impacts are concerning for me.  That was the main reason my oncologist wanted weekly. he said he could control the blood counts better.

Cucu, do you still have a headache?! What side effects are hitting you still?  So sorry you haven't gotten relief yet. Damn it! That seems like a long time.

Chris, I think that was part of my struggle.  I really had zero personal life to enjoy things. It was all about laying around and going for chemo. And forcing myself to take a short walk every day. I just couldn't see myself doing that for 3 more months. I was losing my ability to stay positive and focused. So, decided it was time to change it up a bit.  Good luck at the radiologist tomorrow. Can't wait to hear about his input.

long time, agree

My headache stopped only for few days after the transfusion and after chemo #5 came worse.

Also the bone pain was worse, but finally went away.

The neuropathy in my feet got worse and affected my gait and I got numbness in my right hand.

I stay in bed almost all day, I'm dizzy, tired and just feel sick.

My right eye is swollen as my right arm and my lymph nodes on the left side of my neck.

As you say I'm loosing my ability to stay positive.

If I'm sick, due to low blood counts before chemo#6 what I would be after it?

I would look for a second opinion, but no time.

I just pray to pass this somehow.

Thank you for asking and wish you better luck

Cucu me

TeddyandBears_Mom said:

Cucu and Chris

Just so that you know.... I am celebrating this change.  (I hope I am still feeling the celebration after the next round!  LOL)

And, from an emotional perspective - it sure is easier to think that I have 4 to go instead of 12!

Yep, the blood impacts are concerning for me.  That was the main reason my oncologist wanted weekly. he said he could control the blood counts better.

Cucu, do you still have a headache?! What side effects are hitting you still?  So sorry you haven't gotten relief yet. Damn it! That seems like a long time.

Chris, I think that was part of my struggle.  I really had zero personal life to enjoy things. It was all about laying around and going for chemo. And forcing myself to take a short walk every day. I just couldn't see myself doing that for 3 more months. I was losing my ability to stay positive and focused. So, decided it was time to change it up a bit.  Good luck at the radiologist tomorrow. Can't wait to hear about his input.

long time, agree

My headache stopped only for few days after the transfusion and after chemo #5 came worse.

Also the bone pain was worse, but finally went away.

The neuropathy in my feet got worse and affected my gait and I got numbness in my right hand.

I stay in bed almost all day, I'm dizzy, tired and just feel sick.

My right eye is swollen as my right arm and my lymph nodes on the left side of my neck.

As you say I'm loosing my ability to stay positive.

If I'm sick, due to low blood counts before chemo#6 what I would be after it?

I would look for a second opinion, but no time.

I just pray to pass this somehow.

Thank you for asking and wish you better luck

TeddyandBears_Mom

Cucu me said:

long time, agree

My headache stopped only for few days after the transfusion and after chemo #5 came worse.

Also the bone pain was worse, but finally went away.

The neuropathy in my feet got worse and affected my gait and I got numbness in my right hand.

I stay in bed almost all day, I'm dizzy, tired and just feel sick.

My right eye is swollen as my right arm and my lymph nodes on the left side of my neck.

As you say I'm loosing my ability to stay positive.

If I'm sick, due to low blood counts before chemo#6 what I would be after it?

I would look for a second opinion, but no time.

I just pray to pass this somehow.

Thank you for asking and wish you better luck

Oh gosh Cucu! That almost

Oh gosh Cucu! That almost sounds like you are having an allergic reaction.  I wonder if they could increase your Benedryl? 

Please make sure you tell your doctor ALL of this! 

Sending you tons of support and a big hug.

Cindi

TeddyandBears_Mom

Cucu me said:

long time, agree

My headache stopped only for few days after the transfusion and after chemo #5 came worse.

Also the bone pain was worse, but finally went away.

The neuropathy in my feet got worse and affected my gait and I got numbness in my right hand.

I stay in bed almost all day, I'm dizzy, tired and just feel sick.

My right eye is swollen as my right arm and my lymph nodes on the left side of my neck.

As you say I'm loosing my ability to stay positive.

If I'm sick, due to low blood counts before chemo#6 what I would be after it?

I would look for a second opinion, but no time.

I just pray to pass this somehow.

Thank you for asking and wish you better luck

Fatigue Finally Lifted

It has taken 8 days for me to have enough energy to do stuff.  I am still short of breath when I try to move too fast.  But, at least I had a productive afternoon.

So, I sure hope that going every 3 weeks doesn't take any longer than this last weekly did to work through.

Question for all....  If / when you had fatigue, did you also have breathing issues?  And, if yes... did they resolve in between treatments when your energy got better?

I'm thinking mine will continue to improve this week and was curious if others had this same kind of impact.

Something I think is interesting and may be TMI.... On my weekly treatments, I used Miralax the day after chemo and always skipped that day going to the bathroom.  Now, remember I didn't have chemo yesterday, but I skipped going to the bathroom today just like my "schedule" has been. Very strange.

Another positive today.... I was actually able to eat something besides chicken and baked potatoes tonight.  Spaghetti is my favorite food and I got brave enough to cook it and eat it.  Soooo good!  And I didn't get sick from it....  :-)

I hope you all have a great weekend.

ConnieSW

TeddyandBears_Mom said:

Fatigue Finally Lifted

It has taken 8 days for me to have enough energy to do stuff.  I am still short of breath when I try to move too fast.  But, at least I had a productive afternoon.

So, I sure hope that going every 3 weeks doesn't take any longer than this last weekly did to work through.

Question for all....  If / when you had fatigue, did you also have breathing issues?  And, if yes... did they resolve in between treatments when your energy got better?

I'm thinking mine will continue to improve this week and was curious if others had this same kind of impact.

Something I think is interesting and may be TMI.... On my weekly treatments, I used Miralax the day after chemo and always skipped that day going to the bathroom.  Now, remember I didn't have chemo yesterday, but I skipped going to the bathroom today just like my "schedule" has been. Very strange.

Another positive today.... I was actually able to eat something besides chicken and baked potatoes tonight.  Spaghetti is my favorite food and I got brave enough to cook it and eat it.  Soooo good!  And I didn't get sick from it....  :-)

I hope you all have a great weekend.

Questions

I noticed my appetite began to improve when I had the week delay because my platelets were low.  It was a nice time for it because my family was together on our annual week's stay on monhegan island and my daughter is a great cook.  I still only wanted small portions but I enjoyed the food and managed more than just a few bites.  I never had nausea or taste issues- just filled right up and found food unappealing.  As I recall the shortness of breath didn't abate till after treatment was completed.  I'm sure it was due to the severe anemia.

good luck with your new plan.

Editgrl

TeddyandBears_Mom said:

Fatigue Finally Lifted

It has taken 8 days for me to have enough energy to do stuff.  I am still short of breath when I try to move too fast.  But, at least I had a productive afternoon.

So, I sure hope that going every 3 weeks doesn't take any longer than this last weekly did to work through.

Question for all....  If / when you had fatigue, did you also have breathing issues?  And, if yes... did they resolve in between treatments when your energy got better?

I'm thinking mine will continue to improve this week and was curious if others had this same kind of impact.

Something I think is interesting and may be TMI.... On my weekly treatments, I used Miralax the day after chemo and always skipped that day going to the bathroom.  Now, remember I didn't have chemo yesterday, but I skipped going to the bathroom today just like my "schedule" has been. Very strange.

Another positive today.... I was actually able to eat something besides chicken and baked potatoes tonight.  Spaghetti is my favorite food and I got brave enough to cook it and eat it.  Soooo good!  And I didn't get sick from it....  :-)

I hope you all have a great weekend.

Glad your appetite

is coming back.  That's so important for all sorts of reasons.  I know I feel so much better mentally and physically when I can eat normally.

FWIW, though I haven't experienced a high level of fatigue, I have noticed a bit of short-windedness during strong physical exertion.  It's not bad, but it's definitely something that I didn't experience prior to chemo.

This go round, I am going to start Miralax the day before chemo along with stool softener and continue with the Miralax for at least the first 3 days.  Things were better the second round then the first in this regard, though not optimum, so  I'm hoping this will normalize things even more.  Now I understand why there are all those commercials for laxatives on TV...

Gorgeous weather here in California after a tiny bit of rain.  If it isn't going to rain, at least it can be wonderful weather.  Plan to enjoy every bit of it! 

Will report on my appt with the radiologist in the other thread..