Getting Concerned

jane65 · July 2009

Some things that are going on in my body are starting to concern me, especially since I've been on a chemo break for about 6 weeks. My belly feels stuffed and I get pains occasionally, my right ankle is swollen again, like it was when the lymph nodes on that side of my body weren't letting the lymph system drain, and I've been getting occasional pains very low down on both sides of my pelvis.

I've also been feeling very tired again as the day goes on.

I'm seeing the oncologist on July 23rd and repeating the CT scan on July 30th. I'm seeing the oncologist on August 10th and have a strong feeling I'll be back on chemo then.

Next week my hubby is on vacation and we have no doctor's appointments, and I'm going to keep it that way. We have no plans to go away, we relax and enjoy renting movies, bringing in food, or dining out . Perhaps we'll go to the pool in our 55+ community. It just doesn't feel like I'd have the energy to pack and get away, nor do we really want to.

For 2+ years I've handled this disease with rarely a tear, I've dealt with it through anger and fighting the cancer, but I'm just getting weary and I know what's coming.

It's also depressing to keep seeing reports that women with late stage diagnosis, have a 30% chance of making it for 5 years. It's like a constant drumbeat on so many reports. I'm staged 4B epithelial ovca with mets. to the lymph nodes and I know the score.

I just had to get it out, Jane

Susan523 · July 2009

CALL YOUR DR.
Hi, Jane,

I don't mean to freak you out or anything, but if I were you, I'd call my doctor. Cancer patients are suseptible to blood clots; or "deep vein thrombosis" (you can check it out on Webmd...symptoms, etc.)

After my 1st round of Taxol/Carbo, I found a couple of lumps in my arm, and when I called my Dr's office about it, they had me go straight to the hospital or urgent care to have it checked out. When I got there, they did an ultrasound from my neck to my hands. Nothing to it; it was interesting, in fact. Anyway, once diagnosed, they put me on blood thinners for a while (coumadin).

I hope you won't feel discouraged for too long. I know; I'm the same way... it's so hard to stay positive for me, too... 3 sessions of chemo in 3 years. (I'm stage 3C). Sometimes I just have those days that I have to cry it out; and sometimes other days are "okay"; but it rarely leaves my mind, and that is so hard, isn't it?

It sounds like you have that gloomy feeling over "what's coming". Well, I do that too, sometimes; but now I also know that PARP Inhibitors are coming, too! Did you hear about that?
It's for Ovarian & Breast Cancers. You may want to ask your Dr. if there happens to be a Research Study you can qualify for (?) Just a thought... I'm going to be asking about it at my next appointment, but that won't be until September.

Meantime, you hang in there, and know that doctors and researchers are constantly working for us; trying to find a cure; and all of us here are sending you our thoughts & prayers~

~Susan xoxo

Cindy54 · July 2009

Susan523 said:
CALL YOUR DR.
Hi, Jane,

I don't mean to freak you out or anything, but if I were you, I'd call my doctor. Cancer patients are suseptible to blood clots; or "deep vein thrombosis" (you can check it out on Webmd...symptoms, etc.)

After my 1st round of Taxol/Carbo, I found a couple of lumps in my arm, and when I called my Dr's office about it, they had me go straight to the hospital or urgent care to have it checked out. When I got there, they did an ultrasound from my neck to my hands. Nothing to it; it was interesting, in fact. Anyway, once diagnosed, they put me on blood thinners for a while (coumadin).

I hope you won't feel discouraged for too long. I know; I'm the same way... it's so hard to stay positive for me, too... 3 sessions of chemo in 3 years. (I'm stage 3C). Sometimes I just have those days that I have to cry it out; and sometimes other days are "okay"; but it rarely leaves my mind, and that is so hard, isn't it?

It sounds like you have that gloomy feeling over "what's coming". Well, I do that too, sometimes; but now I also know that PARP Inhibitors are coming, too! Did you hear about that?
It's for Ovarian & Breast Cancers. You may want to ask your Dr. if there happens to be a Research Study you can qualify for (?) Just a thought... I'm going to be asking about it at my next appointment, but that won't be until September.

Meantime, you hang in there, and know that doctors and researchers are constantly working for us; trying to find a cure; and all of us here are sending you our thoughts & prayers~

~Susan xoxo

For Jane
So many times we are given a diagnosis of doom and gloom that says in 2 weeks, three months, two years we may not be here. No one knows when we leave this earth, except for God. And unless He has sent you a personal invitation recently, I would just focus on getting through each day. You already know the facts. You already know just how sometimes those facts are wrong, proven by all the long-term survivors here on this board. Live each day as best you can and place the rest in the hands of God.I know that is easy to say, but when it comes down to living it, it sure is mighty hard.There are so many new things that the doctors and researchers come up with every day. As Susan said, there are research trials going on. Ask your doctor about them. I wish you the best. Hugs, Cindy

carol2dogs · July 2009

Understand your concern
Jane,
I understand your concern. I had symptoms very similar to yours and knew in my gut that the cancer was back. It was, but the good news is that I did not need surgery, just chemo. I'm so sorry that you have had such a very short break. About those statistics. Having had multiple statistics courses, I need to reiterate a truth about statistics. They reflect mathematical trends across specific populations, and have little to no relevance for any individual member of that population. You are unique and the length of the rest of your life is in God's hands.
I like your staycation plans! It sounds like you have a very positive attitude towards enjoying next week. Please do enjoy it, you deserve it!
Love and hugs, Carol

bluerose · July 2009

You take your vacation at home and enjoy it
I am an 18 year survivor of non hodgkins lymphoma and doctors go white when they see me in the hospitals for appts, doctors who worked on my case that many years ago I mean and haven't seen me since. I know what they are thinking 'woah, she's still alive?'. lol. Haha fooled ya. lol. Like Cindy says, no one knows but God what the plan is for us so please try and not think the worst but that's easier said than done - I am in the middle of fighting that off myself - thinking the worst about some new symptoms.

I had to smile when I read your posting about the no doctors appointments during your vacation because I actually cancelled several doctors appts about 2 years ago so that I had 2 weeks of NO APPOINTMENTS for once in months and it did me good - probably better than all the gloomy appointments that mostly resulted in no real answers - just more worry.

I hope you enjoy your time at home munching on popcorn and cuddled with hubby on the couch watching stakes of videos and just chilling. I hope also that this posting finds you feeling a little better today than yesterday. Blessings, Bluerose.

jane65 · July 2009

Susan523 said:
CALL YOUR DR.
Hi, Jane,

I don't mean to freak you out or anything, but if I were you, I'd call my doctor. Cancer patients are suseptible to blood clots; or "deep vein thrombosis" (you can check it out on Webmd...symptoms, etc.)

After my 1st round of Taxol/Carbo, I found a couple of lumps in my arm, and when I called my Dr's office about it, they had me go straight to the hospital or urgent care to have it checked out. When I got there, they did an ultrasound from my neck to my hands. Nothing to it; it was interesting, in fact. Anyway, once diagnosed, they put me on blood thinners for a while (coumadin).

I hope you won't feel discouraged for too long. I know; I'm the same way... it's so hard to stay positive for me, too... 3 sessions of chemo in 3 years. (I'm stage 3C). Sometimes I just have those days that I have to cry it out; and sometimes other days are "okay"; but it rarely leaves my mind, and that is so hard, isn't it?

It sounds like you have that gloomy feeling over "what's coming". Well, I do that too, sometimes; but now I also know that PARP Inhibitors are coming, too! Did you hear about that?
It's for Ovarian & Breast Cancers. You may want to ask your Dr. if there happens to be a Research Study you can qualify for (?) Just a thought... I'm going to be asking about it at my next appointment, but that won't be until September.

Meantime, you hang in there, and know that doctors and researchers are constantly working for us; trying to find a cure; and all of us here are sending you our thoughts & prayers~

~Susan xoxo

Hi Susan,
Thanks, you didn't freak me out you alerted me to a possible problem.
I've had the swelling in my ankle off and on for about a year now, and my oncologist has sent me for doppler studies twice.

Each time it showed no blood clot in either leg from toes to pelvis. He's assuming it may be a little edema since it isn't swollen when I wake up, but does swell as the day goes on.

His other thought was that it's the cancerous lymph node on my femoral artery, which isn't allowing the lymph system to drain properly in my leg. It's inoperable since it's wrapped around the artery.

I looked at your profile page and see that you've really had a rough time with this horrible disease, and your right it does really get you down. Especially since we know that it's a chronic disease and we have to deal with it, every time it relapses. And I agree that it rarely leaves your mind.

I've heard great things about the PARP inhibitors, I hope they rush it through so that we all can benefit.
I'll ask my oncologist about it and let everyone know what he says.

Thanks for your reply, and you hang in there, too.

Take care of yourself,
Jane

jane65 · July 2009

Cindy54 said:
For Jane
So many times we are given a diagnosis of doom and gloom that says in 2 weeks, three months, two years we may not be here. No one knows when we leave this earth, except for God. And unless He has sent you a personal invitation recently, I would just focus on getting through each day. You already know the facts. You already know just how sometimes those facts are wrong, proven by all the long-term survivors here on this board. Live each day as best you can and place the rest in the hands of God.I know that is easy to say, but when it comes down to living it, it sure is mighty hard.There are so many new things that the doctors and researchers come up with every day. As Susan said, there are research trials going on. Ask your doctor about them. I wish you the best. Hugs, Cindy

Cindy
Hi Cindy,
Thanks for the encouraging words, no I haven't gotten that personal invitation yet, and I think that's a cute way to put it.
I see from your profile page what a wonderful, loving daughter you've been to your Mom, and I'm sure she's so proud of you.

You're a very strong lady, it comes through in your words and I appreciate what you said.

Thanks again, I wish you the best as well.
Jane

jane65 · July 2009

carol2dogs said:
Understand your concern
Jane,
I understand your concern. I had symptoms very similar to yours and knew in my gut that the cancer was back. It was, but the good news is that I did not need surgery, just chemo. I'm so sorry that you have had such a very short break. About those statistics. Having had multiple statistics courses, I need to reiterate a truth about statistics. They reflect mathematical trends across specific populations, and have little to no relevance for any individual member of that population. You are unique and the length of the rest of your life is in God's hands.
I like your staycation plans! It sounds like you have a very positive attitude towards enjoying next week. Please do enjoy it, you deserve it!
Love and hugs, Carol

Carol
Hi Carol,
You're right, we do know in our gut when the cancer is raising its ugly head again, and my symptoms lead me to believe it's back.

My first and only real remission was after carbo/taxol and that lasted 4 months, so we expected this break to be very short. In fact my oncologist was torn between starting a new chemo, or giving my body a chance to rest after 10 months of Topotecan, we chose the rest period.

Staycation, I understand that's in the dictionary now, so many people are opting to not pack bags and hop in a plane.

I hope you're feeling well and enjoying the summer. Thanks for your reply.
Hugs back to you,
Jane

jane65 · July 2009

bluerose said:
You take your vacation at home and enjoy it
I am an 18 year survivor of non hodgkins lymphoma and doctors go white when they see me in the hospitals for appts, doctors who worked on my case that many years ago I mean and haven't seen me since. I know what they are thinking 'woah, she's still alive?'. lol. Haha fooled ya. lol. Like Cindy says, no one knows but God what the plan is for us so please try and not think the worst but that's easier said than done - I am in the middle of fighting that off myself - thinking the worst about some new symptoms.

I had to smile when I read your posting about the no doctors appointments during your vacation because I actually cancelled several doctors appts about 2 years ago so that I had 2 weeks of NO APPOINTMENTS for once in months and it did me good - probably better than all the gloomy appointments that mostly resulted in no real answers - just more worry.

I hope you enjoy your time at home munching on popcorn and cuddled with hubby on the couch watching stakes of videos and just chilling. I hope also that this posting finds you feeling a little better today than yesterday. Blessings, Bluerose.

Hi Blue
Hi Bluerose,

18 years, God Bless You, that's remarkable. Of course we're now concerned about your heart problem,and that darn cyst on the ovary.
Yes you do need a new family doctor, get an internist they're more specialized. You can get a referal from your hospital, or a suggestion from someone you trust.
Get on this, girl, it's not good for your health to be dealing with the stress.

I'm sorry you're dealing with this on your own, but you need to be your own health advocate! You must take control and get the appointments set up. I'm done hollering, you can come out now.

Just a side issue, is that your house in your picture?

Thanks for the encouraging words, so far we're doing ok.
I'll let you know how it goes by the end of the week.

And you're right, no doctors for a week is a vacation!

Feel good, and let us know how everything goes, we're concerned and we'll be waiting to hear.
Hugs,
Jane

bluerose · July 2009

jane65 said:
Hi Blue
Hi Bluerose,

18 years, God Bless You, that's remarkable. Of course we're now concerned about your heart problem,and that darn cyst on the ovary.
Yes you do need a new family doctor, get an internist they're more specialized. You can get a referal from your hospital, or a suggestion from someone you trust.
Get on this, girl, it's not good for your health to be dealing with the stress.

I'm sorry you're dealing with this on your own, but you need to be your own health advocate! You must take control and get the appointments set up. I'm done hollering, you can come out now.

Just a side issue, is that your house in your picture?

Thanks for the encouraging words, so far we're doing ok.
I'll let you know how it goes by the end of the week.

And you're right, no doctors for a week is a vacation!

Feel good, and let us know how everything goes, we're concerned and we'll be waiting to hear.
Hugs,
Jane

Hi there Jane
Here in Canada where I live we can't have a specialist as a family doctor, you have to be referred to specialists by family doctors.

No that's not my house in the picture. I think that's from Katrina but not totally sure. I saw it on another member's page and thought it was a good symbolic picture for how life singles out certain people for certain things and with our cancer battles, it's so personal but the bottomline is that no matter what the odds, one can survive a disaster like cancer, just like the Katrina disaster and this house. That's why I used it. I will only use this picture for a little while and then back to my original blue rose picture.

Anywho, thanks for you support and suggestions, I really appreciate them. Hope you have a good day. Blessings and a hug, Bluerose.

BonnieR · July 2009

Enjoy your week
Dearest Jane,

It sure sounds like you have lymphodema in your leg and that is treatable so a phonecall wouldn't hurt and remember just making that call doesn't mean you are making an appointment to see a Doc :-) I know how important them weeks without any appts can be. The 23rd is only 10 days but they may want to check your leg again or get you set up with a specialist that works with lymphodema. Just my 2cents worth.

Also so glad you come here to let it out ~ that is one of the best things you can do for yourself. Let it out, share with others that understand, and use whatever works for you to fight. I am one of them people cry hard and laugh hard so for me I shed the tears then get on with living. So please know crying is okay and doesnt' mean you have given up or become weak in your fight ~ think of it as a pressure release when needed.

Sending lots of hugs ♥ Prayers your way. Bonnie

Getting Concerned

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