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Latest lab results not what I hoped for

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

in the last three months my CA-125 went from 607 to 1526.  It is quite a jump.  But it still is not as high as it was before I had the radiation.  It was 1586.  My doctors always tell me the marker is just a number.  It only becomes a concern if there are symptoms or changes in the CAT scan.  I know that doubling is a concern,  and this is more than doubling.

I picked up my CAT scan today that I Had done last Wed.   It was the 6 month follow-up from the SBRT.   It showed that the paratracheal node got a little smaller.  So the radiation was still working.  The lymph node in my abdomen grew a little larger, but I am hoping we will just continue to observe it.  I go see the onocologist on Wed.

unfortunately I still have a frequent cough, especially at night.  I have been off the BP pill for a month now.  The CAT scan did say there was scarring in the lung due to the radiation.  I am still looking for agood night sleep.  I still take the codeine cough syrup and Tessalon pills.  It seems the wheezing is worse now.

Except for the cough I am feeling good.  I have enjoyed doing all the spring cleanup in my gardens.  It is amazing how everything has sprouted up since we have been home.  The spring flowers are beautiful.

hope you are all doing well.  I will update you on what the onocologist says on Wed.  In peace and caring.  You all remain in my prayers.

AWK
Posts: 364
Joined: Mar 2013

Sending you positivity and light. Enjoy your gorgeous gardens and find peace and comfort in them too.  As you wish so for me I also send you wishes and prayers for good news and strength.  Living fully - Anne

Kathy G.'s picture
Kathy G.
Posts: 190
Joined: Dec 2012

My dear Ro...

I may not post alot, but I follow the progress of you & all the other ladies who supported me in my time of need. Like I posted on Anne's results I am just in awe of how many of you continue to fight your battles with such dignity and perserverance.

I don't know if I would have been able to do the same.

I pray for you during your trying times like with the ongoing, annoying, keep you up at night cough, and will continue to pray for you through this. No doubt just another bump in the road, and God knows you've had your share of hurdles!

Enjoy your garden and Spring flowers! I don't know if it was the longest, darkest winter I can recall in a long time or just that I love the rebirth Spring brings, but I am just so grateful to see my tulips, tiger lilies, and hostas breaking thru the soil and the grass turning emerald green.

Kathy 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Sending good vibes to you Ro!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

Ro, I am sorry to hear you are still struggling with the cough, but happy to hear you feel good and are living every day to the fullest.  Spring is a happy time with the flowers coming up and bringing her bright colors.  

We are praying for you and eager to hear back from you.

PS - is that YOUR beautiful garden behind you in your picture that we have been admiring all these years?

Kaleena's picture
Kaleena
Posts: 1875
Joined: Nov 2009

Dear Ro:

I haven't been on the boards for a bit.  So sorry to hear about the doubling of your numbers.  I know how that must be a concern for you.   I just love your spirit and I think of that spirit when I am down.   So glad that you are feeling good except for that darn cough!

Anyway with spring in the air, it is such a good feeling.   I always love your photo with the flowers.  It makes me smile.

My best to you with regard to your appointment on Wednesday.

((HUGS)))

Kathy

Abbycat2's picture
Abbycat2
Posts: 634
Joined: Feb 2014

Ro,

You have been on my mind and I have been wondering how you were doing after your treatment.  I am sorry to hear about the CA-125 going higher, but am glad to hear that your tumor has shrunk.  If the abdominal tumor continues to grow, will your doctor consider radiation or perhaps surgical removal?  You have been through so much and now with the coughing and wheezing.  I pray for peace and good health for you and all the other ladies here.  Planning any neat trips in the future?

Warm Wishes,

Cathy

 

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I don't look at the boards every day, but I've just seen your post, Ro.  I am so sorry those darned numbers are going up again.  Not the news you would have wanted, I know, but, as you say, they are only a number and it's how you feel that's most important.  It sounds as if the stereotactic radiotherapy is still doing it's job and that is good news.  But I am sorry that the cough is still troublesome and that stopping the ACE inhibitor hasn't made a big difference - I was hoping it would. 

Spring really is a wonderful season, isn't it?  The daffodils have been beautiful in the UK this year and the buds on the cherry blossom are just waiting to bloom in the coming weeks.  Today we even had bright sunshine and temperatures of 68 degrees - walking along the seafront promenade where we live was lovely.

With kindest wishes
Helen x

ConnieSW's picture
ConnieSW
Posts: 1335
Joined: Jun 2012

Those darn numbers went up.  Gardening  is at least as good therapy as your trips so keep working.  Here the only signs of spring are the tips of bulbs just breaking through and college students in shorts and flip- flops.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I saw my onocologist Wed.  He asked if I saw my numbers.  I said yes I did.  He said he was not concerned about this number, but what the next one shows.  He wants to do another marker in in 4weeks.  He said the number was not that much different from the ones I had last summer (1582 and 1179).  He said the CA-125 has always been a good marker for me.  It indicates that we will probably see changes in the CAT scan sometime in the near future.   He was not concerned about the increase in the para aortic lymph node yet. 

I asked if all the prednisone I have been taking could affect the marker, or if the inflammation in the lung could affect it.  He said he did not know.  He again told me that Radiation Onocologists never think that radiation causes any side efftects.  But he believes the cough is from the SBRT.

He was most concerned about the continuing cough and disturbance of my sleep.  That made me happy that he was concerned about my quality of life.  This lack of sleep is really getting to me.  He has put me back on 60mg of Prednisone or 5 days, and then 40mg for 5 days and then 20mg.  He referred me to a pulmonologist, but do not have an appointment until May6.  The nurse asked for an appointment as soon as possible.  I was hoping with the onocologist's referral it would be sooner.

He reordered my codeine cough syrup and told me to take as often as every two hours if needed.  I told him the cough wakes me at 1:00 every morning and several more times every night.   He said set the alarm for 12:30 and try to keep ahead by taking the cough syrup then.  I am still taking the Tessalon cough pills three times a day.  A hot toddy (water, lemon juice, honey and whisky) has become my night time drink. 

My neice is in Essentail Oils.  She gave me something to rub on my chest and neck, and then some drops to put in juice.  Unfortunately that did not help either.  I tried Vicks on the bottom of my feet and chest, but that did not help either. 

Last night I took the 60mg of Prednisone.  The cough woke me as usual.  I took the cough syrup right way.  I used only one cough drop through the night and slept until 7:00.  I feel like a new woman.  I am wide awake and do not feel tired like every other morning.  So I hope this big dose of Prednisone is working already.  The Pharmacist told me I would be getting a lot of house cleaning done!

We do have a trip planned for July.  It is 15 day bus trip called Majestic Parks tour.  It goes to the Northwest States.  We will see Mount Rushmore (on my bucket list), Glacier National Park, Yellowstone Park and Old Faithful, and the Badlands National Park.  It should be a beautiful trip.  I hope we can still take the trip.   I did not ask the onocologist about it yesterday.  My gyn/ono in Florida always tells me that delaying the start of chemo does not affect how the chemo will work.  So after this next lab we will see if it on to chemo,......or on to the Majestic Parks.  I am hoping for the Parks.

Hope you all are doing well.  Thanks again for your positive thoughts and prayers.  I do appreciate them.  In peace and caring.

 

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Ro, I am holding you in my thoughts and sending you energy for continued strength and healing blessings.  Hope you get to make your trip! - Helen

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

So sorry that your CA 125 is rising.  i hope you get some relief from the cough.  i get a cough and congestion after every chemo, but Musinex usually takes care of it.  Mine is uaually not that bad.  6 weeks ago I did have a cough that I thought was going to take my insides out,m slept in a chair for a few days.  The PA gave me a perscription for Tessalon type cough syrup that helped me sleep.  

I hope your vacation works out.  I have had chemo postponed and it didn't change anything.  Once so I could finish my last weeks of school feeling Ok and once for a trip.  My Dr. said he was glad we took the time and enjoyed ourselves.  You will enjoy your trip.  You are coming to my country.  Yellowstone and Glacier are in my back yard.  The scenery between them is absolutely spectacular.  I hope you get to see them.  Prayers and hugs, Lou Ann

txtrisha55's picture
txtrisha55
Posts: 676
Joined: Apr 2011

Your trip sounds fantastic. If the results of your last trip does the same as this trip might, I would vote for the trip. Wishing you all the best. trish

 

Ps I posted a pic of my grandson William in the blue bonnets so you could see what they look like. It is under expressions on my profile.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Everyone  is so encouraging.  I do appreciate all of you, just sorry we know each other through this board.  It is helpful that others know the struggles we go through.  It is nice to be able to share our ups and downs, and know someone understands.

Trish I love the picture of William in the field of bluebonnetS.  What a handsome young man he is.  He must be 8 years old now.  So glad you get to enjoy him.  The bluebonnets are beautiful.  I don't think I have ever seen them blooming.  I enjoyed your other pictures, too.  It was nice to put a face with a name.  I still have my lumanaria hanging on my refrigerator.  That was so kind of you to remember all of us survivors on your Relay for Life.

when I picked up my cough syrup from the pharmacy, the pharmacist said maybe I needed some Gabapentin.  It is a seizure medicine that is also used for neuropathy.  She mentioned that  damage to laryngeal nerve  can cause coughing.  Since my lymph node was so close to the trachea, the radiation may have done something to that nerve.  I looked it up on the Internet.  Some people have had a chronic cough for 10 years.  I can't imagine that.  They did have less coughing with the Gabapentin.  I will certainly question the lung doctor about it when I see him.  

After I had my night with 5 hours of sleep, the next night was very little sleep.  I had taken a hydrocodone pain pill the night before.  I think that helped me get the sleep.  Hydrocodone is the cough suppressant in The Tussinex cough syrup I was taking.  I ran out of it, so I toak the pain pill. 

So I called the onocologist to see if I could get a prescription for the hydrocodone.  I took one last night.  My cough woke me at 2:30, but I was able to go sleep again and slept till 7:00.  That was day 3 of the 60 mg of Prednisone, so I hope tonight will be a better night sleep.

Hope you all have a good weekend.  In peace and caring.

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

You've been a pillar of strength for the rest of us. Thank you for the updates. Hoping you continue to feel good when you're not coughing, and that you begin getting regular sleep again.

 

nancibee's picture
nancibee
Posts: 59
Joined: Sep 2012

OK believe it or not, my doctor prescribed Gabapentin for my insomnia. I  was alternating between lorazepam (ativan) and zolpidem (ambien). They would help me to fall asleep but I would wake up 4 hours later. The doctor told me I could also take gabapentin or seroquel to stay asleep. Seroquel is an anti-psychotic so I chose gabapentin. I take 600-900 mg and I can sleep 8 hours. I really like the gabapentin. I do take breaks occasionally because I've read that you can build up a tolerance and it seems to be constipating. So I definitely recommend trying gabapentin at night. I think for neuropathy, the dosages can be really high because it is really difficult to overdose on gabapentin but the low dosage works for me for insomnia.

Double Whammy's picture
Double Whammy
Posts: 2821
Joined: Jun 2010

and hoping you can get that cough under control and that the numbers are just numbers, and another course of Round Up won't be necessary. 

Suzanne

Ann55
Posts: 48
Joined: Jun 2013

Hope they find the right combination for your cough,that lack of sleep wears you down.Hoping things get better soon,you are my hero.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

The hydrocodone did not help me sleep when I am awakened at night with the coughing.  I called the onocologist today to see if I could try a trial of the Gabapentin to see if the laryngeal nerve was damaged by the radiation.  Unfortunately the nurse makes all her phone calls at the end of the day.  The doctor did approve the Gabapentin, but it was too late to pick it up at the pharmacy.  So I will start it tomorrow.  He started me on 100 mg three times a day.  I sure do help it helps.  I am still looking for a full night's sleep.

the most frequent side effects are nausea or fatigue.  since I tend to get nauseated my husband said " do you want to cough, or be nauseated".  There is something for nausea, but the cough medicines sure are not taking care of the cough at night.  He is ready for me to stop coughing also.

I am down to 40 mg of Prednisone daily.  I took 60 for 6 days since the cough was not better at night.  I don't like the hunger and weight gain with the prednisone.  Hopefully it is helping the pneumonitis.  The CAT did show scar tissue in the lung, so whether that means the pneumonitis is better or resolved, I don't know.

My husband did order a wedge to use when in bed.  I start out the night in bed, but have not been able to stay there all night.  I move to the recliner, so I don't disturb my husband all night?  

Keep the prayers coming that the Gabapentin stops the cough at night.  I will definitely thank the pharmacist that suggested it.   I am sure if I would have stayed in Florida and followed up with that lung doctor would have suggested this whenthe cough did not improve.  

Thanks again for your well wishes and prayers.  In peace and caring. 

cheerful
Posts: 237
Joined: Apr 2011

Hi Ro:

  I will continue to pray for you.  I do hope that you can get your cough under control and that your new medication that the oncologist prescribed works for your cough. I hope you can get some decent sleep in the days and weeks ahead.

Cheerful

a/k/a Jane

 

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Any news on whether the Gabapentin is helping, Ro? I've been thinking about you and wondering whether you are managing to get the cough under control and get some sleep.  This has gone on so long you must be very weary and fed up with it all.

Thinking of you
Helen

nancibee's picture
nancibee
Posts: 59
Joined: Sep 2012

Don't get discouraged if the Gabapentin doesn't work. He prescribed you a really low dosage. Diabetics take as much as 2400 mg daily. My preescription was prescribed not for neuropathy, although I have been diagnosed with multiple sclerosis but specifically for insomnnia by the Kaiser psychiatrist. So my prescription has instructions to take before bedtime. I did some Internet searches on Gabapentin and insomnia.  Here is a link to one of the studies:

 -http://www.ncbi.nlm.nih.gov/pubmed/20124884

 

Here are some reviews:

 

http://www.drugs.com/comments/gabapentin/for-insomnia.html

 

I also found something where it says it takes about an hour to kick in. Hopefully, it will not make you drowsy during the day.  My cousin is a diabetic with severe neuropathy and she told me that she has been taking high doses for years during the day. I am not sure why people can take it during the day and not be drowsy, yet it still can enhance slow wave sleep if taken at night. But then I am not a doctor.. Good luck and sweet dreams. 

elpasorudy's picture
elpasorudy
Posts: 84
Joined: Jan 2013

Ro,

You are a terrific role model. I admire your attitude and fighting spirit. Thinking of you, sending positive vibes your way ... Sounds like there's a wonderful vacation in the works.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

i can't tell that the Gabapentin has done anything for my cough.  I still get awakened every night and then it wakes me every hour.  I have had a few hours of sleep some nights, but mostly it is not good sleep.

i called the doctor to see if I could increase the dosage to 200 mg three times a day.  He said I could increase it.  I sure hope it starts working soon.  The codeine cough syrup, Tessalon perles and hydrocodone is not stooping the cough?  It is frustrating.  I see the pulmonolgist on Wed.  Hope he has a solution.

hope you all are doing well.  You all remain in my prayers, as well as your caregivers.  I know this is hard on them, too.   In peace and caring.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Grrrh!  I had hoped that the Gabapentin was a way forward for the cough - I hope that an increased dose helps, as the initial dose was quite low.

Good luck for Wednesday - I, too, hope your pulmonologist has a solution.  This has gone on far too long and you must be getting desperate for something to help.

You're in my prayers.
Helen xx

nancibee's picture
nancibee
Posts: 59
Joined: Sep 2012

Unfortunately Gabapentin will not do anything for the cough no matter how high the dosage. It is an anti-epileptic seizure medicine proscribed off-label for neuropathy. One of the side effects is drowsiness and studies have shown that it improves slow wave sleep. So my doctor (psychiatrist) prescribed it for insomnia because ambien didn't work through the night. I take 600-900 mg. about an hour before bedtime. I do not take it during the day. It helps me sleep through the night even when I am having an MS exacerbation that makes me pee every hour when I am lying down. I would try taking it before bedtime. My prescription label says "Take 3 capsules (900 mg) nightly".My doctor told me it is really difficult to overdose on gabapentin. Diabetics who take it for neuropathy take as much as 2,400 mg. or more. It won't stop your cough but maybe you will be tired enough that the cough won't wake you up.

Hope that helps.

 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

The reason the Gabapentin may help the cough is because the intense radiation I had to the lymph node close to the trachea may have damaged the laryngeal nerve which triggers the cough reflex.  It would be a type of neuropathy.  I am still hoping the  gabapentin within increased dosage will take care of the night time cough.  The other cough remedies have not helped. 

Thanks for your input.  I know it is an antiseizure medicine.  There have been studies done to show the gabapentin does work for those with chronic coughs.  I continue to hope I will be one of those it helps.  As you can see the time I am posting this the cough came back tonight!!

AWK
Posts: 364
Joined: Mar 2013

I continue to think of you and hope you find relief.  i decided last night I need to spruce up our backyard.  I will think of you as I attempt to garden!  

nancibee's picture
nancibee
Posts: 59
Joined: Sep 2012

I did know that. If that is the case can he prescribe a booster dose before bedtime with maybe ambien or lorazepam to help you fall asleep? I alternate between the two so I don't build up a tolerance.

 

sorry for the wrong info. Hope you find something that works.

Cindy Bear
Posts: 570
Joined: Jul 2009

Hello Ro. I don't come here very often anymore.. just once in a great while to check on the lovely ladies on this board.. it's hard to believe next month , My mother will have been gone 6 yrs... it hardly seems possible. You remain in my thoughts and prayers as well .. hoping you get some answers, and some resolution soon.

 

Cindy

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