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Need some extra prayers from my breast buddies

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Posted 10/3/2005 12:49 AM (GMT 0)
Hi all

 

I had a call from my pulmonary Dr on Saturday night at 8pm.......not your usual calling schedule. I dont know if all of you remember but when I was first diagnosed they also had concerns about spots on both lungs and my spleen. I was scheduled for a Bronchoskopy/biopsy but was too sick to go to it. This was a month and a half ago. My pulmonary Dr and Onc Dr decided to just do a CT scan instead (last Tuesday) and the results were that the lymph nodes were back to normal size and the spots were as good as gone. Which he went on to explain means that they (more than likely) were cancerous to start with. Now Im scared!!!!!!! I could handle having breast cancer but now I have to deal with lung and spleen too. I have never smoked but my mom did and being the youngest I spent alot of time on her lap. They had thought that maybe the spots were Sarcoidosis but when I asked him about that he said that was no longer a consideration, because the chemo would not have shrunk them. He went on to explain that my Onc Dr would more than likely start a different treatment plan to include these and then wished me luck. I think Im in shock and scared to death. I want to be possitive but this throws me for a loop. Please keep me in your thoughts and prayers.

Posted 10/3/2005 12:57 AM (GMT 0)
Bernadette,God will not give you more than you can handle and this is just another obstacle to climb over.Ask god to carry you through this journey and to prepare you for whatever comes your way.I will be praying for you...Tammy

Posted 10/3/2005 2:20 AM (GMT 0)
Hi Bern-
Sorry for this set back, but keep the faith.....if this is mets to lungs/ spleen, it seems to be great news that the chemo has obliterated it...which means you will be able to fight like he!l and have great results. I know this is hard news to hear, but it sounds like it may not be definitive news, and maybe it is something else? Don't forget to ask for a copy of your reports for your records...

Curious about something though, you mention a cough for a long time, and are now on your 4th antibiotic...has anyone explored whether the cough is related to the spots and possible mets?

Sending hugs...

L&H,
Lori

Posted 10/3/2005 3:01 AM (GMT 0)
Bernadette: I am sorry that you have had this news. I know how frightened you are. I can remember how I felt when I received the news that my counts had gone up 2 yrs ago. Okay, now the good news is that your lymph nodes are back to normal. Right? Right! Also, good news is that the spots that were seen on your spleen and in your lungs are also gone! So whatever regiment of treatment you are on is working. I would be more frightened if the spots were still there while you were taking treatments. Try and keep focused on the positive until you can talk to your onco. Call him first thing in the morning. Don't wait for him to call you. Write your questions down now while you are thinking of them and get answers to them. If you have to wait to talk to him, then go and get copies of your reports. That way you can have them in front of you when you are talking with him.

You have lots of prayers and positive thoughts coming your way. Please let us know what you find out.

Love and prayers...Deb

Posted 10/3/2005 1:24 PM (GMT 0)
Bernadette:

Please keep us updated. The Lord doesn't give you any more than you can take care of. I will be praying that the Lord keeps you strong. Continue to fight hard, you will win.

Peace and blessings to you,

Candy
Posted 10/3/2005 1:29 PM (GMT 0)
From your post it sounds like you expected the spots to be another cancer, but I am willing to guess that they were breast cancer mets. Ask your doctor. If they are gone that means the treatment is working. Be sure you stay on schedule so that if anything shows up again you can get it fast. Hugs and prayers, MK
Posted 10/3/2005 9:49 PM (GMT 0)
I'm so sorry that you have to go through this, as well as dealing with your treatments. My thoughts and prayers are with you.
Chantry
Posted 10/3/2005 11:57 PM (GMT 0)
Bernadette,
I'm not really sure if you know who I am but I wanted to tell you that I will keep you in my prayers. Stay strong.
prayers to you
Donna
Posted 10/4/2005 2:22 AM (GMT 0)

Bernadette,

I have never had the opportunity to welcome you to the board, but want to post a note to you to let you know you are in my thoughts and prayers as you wait the visit with your onc.  Like others have said, if the spots are gone after being on chemo, that is good news.  Take a deep breath, and remember we are waiting this out with you.

Hugs and Prayers,

Kitty

Posted 10/4/2005 2:53 PM (GMT 0)
I just wanted to thank all of you for the support and prayers. I have decided to look at this in a more possitive light and think about the fact that the chemo has gotten them. It has been such a shock to me but Iam adjusting better now. I have also been sick (AGAIN) for the last 4 days. On Sunday night I was running a temp of 100. I had a stomach ache and a terrible headache. I think not feeling good has put me in a not so possitive mood it has been a long time since I have felt really good. I keep telling my hubby that I just want to feel good again!!! Im also worried that my chemo treatments will be extended I have only 1 more AC left and then I was supposed to go onto taxol.

Thanks again for the support.

PS Kitty and Donna I have seen your posts and appreciate the welcome too.
Posted 10/4/2005 7:35 PM (GMT 0)
Bern, this is quite a surprise since you were node negative -- weren't you?? I believe that now you have the right attitude. Since it is gone, it is gone. I believe that you will feel a lot better on Taxol. I had no problems on it until right at the end when I had fatigue. Good luck and keep in touch.

JUJU8872

PS I am on Arimidex for 3 weeks and just today got a few body aches. Have been using Aleve every day and today is the first a.m. I needed it.

 

Posted 10/4/2005 7:51 PM (GMT 0)

Bern,

I have never met you but feel close to you because of all the things we have shared together. This had to be a terrible moment when they told you about the lungs and spleen and what they found. My prayers are with you and your right it is good news the spots in the lungs and spleen are gone now. The taxol isn't as bad as the A/C so you will feel better with it. It will help ensure that the spot don't come back so lets cross our fingers and hope that these other things they found are a thing of the past. Gosh I know what you mean when you say you keep telling your hubby you just want it over and to get back to normal. I have faith and hope that things will start going your way soon. My prayers are with you and I think I see the pink feather parade marching your way...keep us posted cause we all care about you... skeeter1

Posted 10/5/2005 2:10 AM (GMT 0)
Juju & Skeeter

 

Thanks for the posts and encouragement. I have had a bad week. Mainly because I still dont feel good.

Juju I actually had one node that was positive, my Dr thought that she had gotten 7 but it was only 3 and 1 of those was positive. I have looked over my path reports and the rest were fibrofatty tissue. I have been looking at my files alot lately and I think I will talk to a lawyer about the misdiagnoses in 2003. (I dont know if you both remember that story) I had a different lump that concerned me but on the reports they said the area of concern was the lump I had removed in July. Im really mad at all of this my % of long term survival has went down alot considering how much it has spread. If they would have done their job in 2003 I dont think I would be dealing with this now. I hate to go on and on about this but I just dont understand how they could have missed it.

 

Anyway enough of that. I still feel nauseaus and my last chemo was a week ago, is that normal?? I ran a temp of 99.8 on Sunday and really felt bad. I have taken my nausea pills and they dont help. I just want a normal day with no pain or nausea. Sorry to be so grumpy.

Posted 10/5/2005 2:34 AM (GMT 0)
((((((((((HUGS)))))))))))))

It still sounds like they are only declaring the lungs and spleen to be mets because it shrank during chemo...it is possible that they were something else and coincidentally shrank at the same time. Frayda can tell you about her lung spot that grew and they assumed it was mets, turned out to be a form of TB!

I know you are concerned and mad and scared...you have a right to be...but try to hang in there till you get an official diagnosis. Also, they need to look at that cough and get a better diagnosis...and the nausea too, it should not last this long.

And if the answers you get are not satisfactory, if they do not fully explain all of the side effects and problems, or if you just are not sure, PLEASE seek a second opinion.

L&H,
Lori
Posted 10/6/2005 2:16 PM (GMT 0)

Bern, Everything your  are going through you have a right to voice what you are feeling so don't feel bad about telling us what you are feeling and thinking, your postings have not been grumpy in anyway. So no need for appologies k... This has to feel like a nightmare to you. I was still had a little sick feeling a week after my last chemo too, but I am sure your nerves and emotions are adding to how you feel also. Do what you think you need to do lawyer wise what makes you feel better then do it. I get so emotional and think if I ever had to go to a lawyer to fight a battle like yours it would make me feel sicker, but everyone is different and some people feel better afterwards. So do what you feel is needed only you know how it will affect you. Bummer about the temp but at least its low grade and not screaming at you. (lol I always say when someones temp is high or blood pressure its screaming at you) silly huh. well anyway keep voiceing here how you feel and never feel bad about it k.. we all understand...I do hope you start to feel better soon and get  back to normal. I went through that and to tell you the truth up until about 3 weeks ago I wondered too if I would ever get there. It seems to come back slowly but it will. Your in my prayers and remember your not alone k...skeeter1

Posted 10/6/2005 3:26 PM (GMT 0)
Lori and Skeeter

Thanks for the posts. I feel like all I do here is grouch about feeling sick. This new thing has thrown me for a loop. I know it is good news that the spots are as good as gone but I also know that it is not good that they were even there, I cant ignore the fact that they were there. If they would have done all ot the tests before my chemo I would have had a better idea of my overall chances of survival. Iam not a pessimist but Iam a realist.

Lori what you wrote about the cough has been something I have thought about all along too.

Thanks again for the input.
Posted 10/6/2005 3:34 PM (GMT 0)

Hi Bernadette!  I am glad that you have found the strength to look at this in a positive light. It is tough but it will help. You said that you had a headache and were sick to your stomach. Do you have kids that are in school are have you been out in public where there are large groups of people? There has been a flu that has hit our schools here w/ those same symptoms. Headache, sick stomach, low grade temp. Normally it only lasts about 48 hrs but we have to remember that what is normal now for others is NOT normal for us. Please check w/ your onco. He can give you something stronger for the nausea. There are all types of meds available when one doesn't work. You just have to ask as most onco won't tell you. Has your onco said anything to you about Herceptin?

As for the attorney, go for it! I think mentally it will give you the edge that you need right now. Something positive from the anger that you are feeling.

Hang in there. You will have days when you will feel good again. It just takes time to fight this darn disease. You may experience some muscle aches from the Taxol. I did. I believe that there is a past post that discusses Taxol.

Gentle hugs...Deb


Posted 10/6/2005 3:51 PM (GMT 0)
Deb

So you had body aches with taxol too, I have heard that alot from the other women here. I have decided to stop worrying about it that wont help anyway. I have decided no more Neulasta though. I have had it twice and reacted poorly both times. I dont have children at home but have step kids every Wednesday and evey other weekend. The youngest had to stay home last time because of a temp. My hubby picked them up last night and when they got here I found out the oldest had stayed home from school because he didnt feel well. Hubby knew it and still brought him. I had a few words with him, in fact quite a few words. I took one look at my step son and he looked sick. I could always tell when my kids were sick because of their eyes and he had that look. I told hubby what were you thinking??????????? Do you want me to be sick for another month????? I have not been in public for a long time and have tried to stay away from anyone that might have a cold I just dont want to risk it. What does Herceptin do?
Thanks for the post.
Posted 10/6/2005 5:24 PM (GMT 0)

Bern-

No apologies necessary!  We are here to listen and support and vent and whine and share whatever is on our minds.....you have every right to feel down and we understand that.  Hopefully you will start getting some real answers to the questions so that you know what you are up against and can fight, fight, fight! For me, knowledge is power, and I needed to know everything I could. 

Hang in there!

Lori

Posted 10/6/2005 6:01 PM (GMT 0)
Lori

I just found a place online that talks about lung nodules and how they can do a needle biopsy. I will ask my Dr about getting that done on my next visit. I want to know 100% that this is mets. I feel the same way about knowledge I have studied everything I can get my hands on. My Onc Dr was surprised when she met me and I had alot of knowledge she said it was much eisier to work with people who had a better understanding of what to expect.

Thanks Lori I appreciate that fact that you are always there and always positive for all of us.
Posted 10/6/2005 10:01 PM (GMT 0)
Bernadette, I am so sorry you aren't feeling well, and this stress isn't making it easier. For me, Taxol, except for the last 2, was easy. Didn't you mentioned that you had a spot on the spleen? When you investigate lung mets, try to look up mets to spleen, too. Also, if the spot on the lung is gone, there isn't anything to biopsy, so please don't get too upset if they can't do one.

In the meantime, please take care of yourself.

JUJU
Posted 10/7/2005 2:31 AM (GMT 0)
Juju

I actually am feeling like my old self again (almost) I just found out that go back to work tomarrow.......YEAH!! I had lots of spots too many to count on my spleen but they didnt do a CT on it just my lungs. I think my attitude will be much better now since Im going back to work, I missed it alot. How many Taxol did you have? I was scheduled for 8 now Im not sure

Thank you for the post
Posted 10/7/2005 8:45 PM (GMT 0)
I actually had 12 weekly Taxol treatments. According to my onc, there was much less chance for infection and low counts. For the last 2 weekly treatments, I had a lot of fatigue. Lasted for two more weeks afterwards. The hardest part was going weekly. Imagine how I felt going to rads daily!

Now that is over, I am much better -- Using Arimidex with an Aleve each day. Also using Paxil for hot flashes. Now having about one small flash a day -- no sweat just hot. Except for the appearance of my body and my short white hair, I would not know that I had been sick.

JUJU

P.S. I, too, had 3 each 1 mm spots on my lungs. Did not go away. The dr here said they see this kind of thing here in the deep South. They believe it is a fungus that lots of people have. I, too, still worry about this.  Reformed smoker, you know!

 

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