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Mom with SCLC


BettyBP

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This is a wonderful site and have been a member since I first heard about the "shadow" on her chest xray. Below is what I wrote last year, but never posted:

Mom is 64 years old, strong and was having problems breathing after bronchitis - was sent for a chest x-ray on March 23.

I have been reading this site since I found out about a "shadow" on my Mom's chest xray on March 24. The past 2 1/2 weeks have been full of doctor visits, lung biopsy, waiting for answers, high stress moments, many tears, screams etc.

Last week on Thursday we did receive the final news that Mom has SCLC and yesterday we met with Onc at Strong Hospital and were given the news that the CT has NOT shown any spread of the disease and it is only in the lungs.

Tomorrow morning we have brain scan (although they dont think it has gone there) to be on the safe side before she starts treatment of chemo and radiation next week.

She has an upbeat attitude and has been taking good care of herself by eating all the right foods etc and plans to beat this disease.

My concern right now is how she is going to feel after her first round of chemo - which will probably be Tues-Wed- Thurs of next week. She wants to attend a dinner that Saturday night if she is able to. Do you think that will be possible or will she be too tired out??

Also, my father is so worried about Mom going thru pain (especially since she is so "normal" right now)- is there any reassuring words to give to both of them (and my brothers)to keep her wanting to fight and beat this awful disease?

If you are a caregiver or a survivor, can you please let me know about the burning pain from radiation, foods and more? Please.

My fear is she will be sick from chemo and radiation that she will want to give up the good eats and taking care of herself. Right now she knows she will get sick and says she will follow her diet - but I know that can change.

Sorry if this is all rambled.....I finally decided to post, because this is so hard to go thru and wake up every morning and WISH it was all a dream.

We have a huge strong family base (my Dad has 5 sisters and 4 brothers- and Mom has 1 brother and 5 sisters) and all are remaining positive for her and hope this helps with healing and bringing her into some type of remission down the road......

January 2008

Mom went thru radiation (brain met) and chemotherapy with not too many side effects (no weight loss) but she did lose her hair (we had a wig party with some friends)and her red counts went down once during chemo and she had a transfustion - she also was low on whites twice and required series of VERY expensive shots.

She probably only vomited once or twice during the chemo treatment time and had NO PAIN from her radiation to the brain and not much pain from the chemo.

Us kids immediatley researched the day we found out about her "shadow" and started her on Flax oil and Maitake D-Fraction BEFORE we even received final diag of SCLC. She has continued this regimen and doctors seem to think thst her diet and supplements helped her to remain healthy.

Our entire family was positive and full of FAITH. Thanks to websites like this, we were able to BELEIVE that this could be beat. After chemo was over in/around August they told her the tumor had shrunk around 80% and was very tiny - she asked for another round because she wanted to fight. The doctors gave her another round and subsequent xrays showed nothing. (we were all sooooo HAPPY)

More info: Mom went thru 16 rounds of radiation to the brain after scan proved positive for cancer, immediatley after radiation - she started chemotherapy.

Mom had to undergo steroids before and during radiation which made her a wonderful chatterbox -

As the year progressed and she finished her 3 rounds of chemo, the doctor told her that her tumor was just about gone and she asked to please let her undergo one more round of chemo.

She underwent her last round and subsequent xrays and scans showed nothing - that is, until last week.

She supposively has a 4cm tumor in the same lung, lower right and in the past 2 days has been coughing up some blood. I am worried as she and my father go visit doc at 10:30 this morning....so scared. I have to note that during CT scan she became ill and vomited while lying down and doc said blood in sputum probably from strain on body from getting sick. One week later she is now getting blood in sputum when she coughs and says it is not all the time. I just pray this isnt the beginning of the end as she has done soooooooo very good since her initial diagnosis last April

Mom is doign great and feels good and docs told her that her regimen of supplements and her diet helped her stay relatively healthy during and after treatments.

What i dont udnerstand is that her report last week said "most likely recurrent" and that the cancer has not spread to abdomen or other lung - if it IS cancer, why would they not have her start chemo immediatley? As it is, they have us coming back on Feb 11 for another CT and then result on Valentines Day (nice)

Mom is strong and will continue to fight - her hair has pretty much all grown back (which she is very happy about) but now the worries are here all over again. We are a positive and strong family - but todays results have me worried.

Does anyone have any information they can share with me regarding blood in sputum from coughing and what this COULD mean?

thanks so much everyone.

Mom has taken her Maitake D and her Flax Seed Oil Pills everyday since initial diagnosis of "a shadow"

Her last CT on January 9th showed a new spot around the size of a thumbnail and she will go for a rescan on Feb 11 (please pray and keep your fingers crossed)

She has been coughing up some blood and the docs seem to think it is from her getting sick on the table during her last scan (she is having bad reactions to dye maybe?) as she has gotten ill from the last two CTs.

Went to talk to ONC yesterday about blood in cough and he is not overly worried and also is not too worried about her new tumor right now.

Would love to hear from anyone that can help during this time - all I can say is THANK GOD that she was here and so healthy for Christmas & New Years and with the docs news yesterday of him not being overly worried - we are all breathing a sigh of relief and whatever news follows with next months scan - she is ready to fight.

I love my Mom, she is the best and sad to hear from my Dad yesterday (after her appt) that she was so scared the previous day that they were going to tell her she was going to die. She doesnt plan on going anywhere.

thanks again everyone - this site is the best

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Welcome, again, Betty. It sounds as tho. your mother was doing so well for a while. I'm sorry that it didn't continue longer. Lots of people have recurrences and still live for a very long time. Doing chemo a second time isn't fun, but it's "doable." My doctors used different meds the second time I had chemo. I think it is too soon to panic. There are still lots of treatments out there. Good luck and let us know about the scan results and Onc. visit in Feb.

Muriel

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Thanks Muriel and Ernie for your replies (made me cry) and beleive me, Mom is ready to fight and all of us are trying to remain positive about the new tumor.

Since September/October we have all felt so hopeful due to her xrays and scans not showing signs of cancer.

I will keep everyone informed on her next CT.

I hate that waiting week......

will pray for everyone here....

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Betty, I am so sorry to read about the new developments with mom. I can say this...dad had a bout with bloody sputum this fall, and it turned out to be pneumonia.

I am not going to lie though...the one thing that raised concern on your posting is that they found something on the lung, but won't do anything until February. We all know how aggressive SCLC is, and I wish so much you could get her in sooner. Do you have other doc options? Could you press harder for an earlier time? Maybe there is a reason for the wait?

Keep us posted, and know there is so, so much hope to be found here!

I will say a prayer.

Jen

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Hi Jen and thanks for the post.

I just called Pluta Cancer Center where she receives her treatement regarding a cough medicine that would help her more.

Regarding waiting til Feb 11 -My brothers and I also questioned this as we do know that SC is soooo agressive and thought they should have started treatment immediately - but both my parents assured us this was the doctors decision and he is not too worried about the new tumor. First off, they havent even called it a tumor yet - report just says "most likely recurrent" - he also told them IT COULD be from her getting sick on the table on Jan 15 while getting her CT. I just dont know - it is soo frustrating. We do beleive it is recurrent tho

Mom feels and looks great and I know she is scared as all heck, but is ready to fight the good fight. I told her this CAN BE BEAT and we all have to remain hopeful

thanks again. I wonder why they wouldnt start treatment immediately.........

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Betty-WElcome to a wonderful site full of the best people, advise and support I think you will find.

If you read my Mom's profile you will see she is 17 months into Small Cell Extensive and still going strong. We have definitely had her Dr's treat her

very agressive and she is on her 3rd recurrence just to her liver and we are now going to Hopkins to get Chemoembolization to her liver. Please take some time to read through the Small Cell area and you will see that despite statistics (which we don't listen to) there are survivors of this very agressive disease.

As far as the blood goes-my Mom when originally DX was spitting up blood but that was because her tumor was so large 9cm-and wrapped around her aorta-this doesn't seem to be the case with your Mom-I would see if I could get started on a new plan a bit sooner.

Please keep us posted.

Dar

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Betty-

Welcome to this site. You will find the people here are the best. Don't know what I would do without them.

Sorry that your mom has had a setback but she sure does sound like a fighter!! I will remember her in my prayers.

You are a wonderful daughter and I am sure she is proud of you.

Let us know how we can help!!

Hugs - Patti B.

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Thanks Patti for the reply. I was able to speak to my Mom's nurse at the cancer center and she called in a prescription for her cough for me...

and while I had her on the phone, I asked why she wasnt starting treatment if they foudn a new spot in her same lung. She told me that the nodule was 1.4cm and they were waiting for her next scan to see if there is change. Her onc told her yesterday that they are not going to do anything until her next scan...

still worries me, but as one of my brothers just said to me "we waited a long time at initial diagnosis". I am not going to over worry and just keep the faith. I told her to pull out all her food books and keep up her anti-cancer foods.

I just spoke with her on the phone and she told me that she hasnt coughed all day! WOOHOO that is a good sign and hopefully the cough and blood was adverse reaction to the dye from CT.

this site is the best and reassuring to have people to talk to about this..... :D

thanks again

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OK. I hate to say this and cause problems...but I wonder about making a call yourself. I just think that if this were me, I would try to push this issue. When you look at stats, you want to get at it RIGHT AWAY, as you know. I remember Katie saying to me one time, "We often have to be our own advocates."

I feel like I am making a big deal out of nothing, but I do know that at my dad's first doc, they were going to put off treatment, and when we went to Mayo they told us that would have been a BAD idea. So...this is a touchy subject for me.

Again, I will say a prayer.

Blessings,

Jen

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Hi Betty and welcome...so sorry that your mom may be going through this again, but please read the posts and you'll find there are many survivors here. I agree with Jen....you know what they say about the squeeky wheel....I was that wheel when my mom was diagnosed. By the way, although I am out here in Reno, my mom lives near you....Oswego, NY (you know, the place that gets all the snow)! Good luck with your mom. Shelley

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I just think that if this were me, I would try to push this issue. When you look at stats, you want to get at it RIGHT AWAY, as you know. I remember Katie saying to me one time, "We often have to be our own advocates."

Jen

Jen - You know what - you are right and tomorrow I am going to make sure that my brothers or I call and try and speak to her doctor. I thought as soon as they gave her diagnosis that they would have gotten her ready for her next round. Your last line of your post got to me and I plan to add it to my sig, as obviously, it is so true.

thanks again.

Why would a doctor wait when there is no spread of the disease outside her lung? When I asked the nurse today about it when I called to get something for her cough and she told me that they told my mother if her symptoms with coughing up blood get worse to call in and then they would start treatment. But the odd thing is, that the nurse first asked me when she was starting treatment!!!! I told her she wasnt coming in until next month for another CT. ohhh, this is waaay too much. This was not my Moms normal nurse......

Mom is healthy otherwise and did not lose more than 5 lb total during treatments......

thanks Jen for the WAKE UP

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Thanks Shelley. Thanks and I will be saying a prayer for you and your Mom.

We have barely have any snow :D on the ground - although it is way below freezing here!! A friend of mine working near Oswego saif they have 3' - so glad it isnt here...

PS - what ship were you on in the picture? I love to cruise - one of my favorite ways to vacation!!

Talked to Mom a little while ago and she feels good - said her and Dad had a fishfry tonight at home...she still hasnt coughed today and I take that as a good sign.

all I can do is pray......

Goodnight all and thanks again,

Wholeheartedly.....

Betty

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I am glad to read that you are going to try to push the issue. You just never know. It sucks though. Stay strong and when you have done your very best, and your mom and docs have done all that can be done, you either know the miracle of healing, or you know you have solace in the fact that everything was done that can be done.

Again, my prayers.

Jen

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I agree with Jen, Small Cell is to Agressive to Wait @ all. My Mom has had 11 more tumors show up within just a couple months of scans. If this is contained in the lung and your Mom is limited then there is a chance for a "cure"-my Mom will never be "cured" because of the mets..... Please call and see if she can start treatment ASAP. I would hate to see her wait and then get scanned in a few weeks and have it show up outside the lung. You or a family member have to be your own advocate believe me. I have been dealing with these Dr's for 17 months @ one up the best hospitals in the country and I have had to put the pressure on them to treat my Mom as agressively as they have. This is not their Mom-she is just another patient to them unfortunately. Please keep us posted.

Dar

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  • 3 weeks later...

Hi all -

Going in to talk to Mom's radiologist in an hour or so to see when she will be starting radiation treatment to the lung to heopfully open her airway up.

We found out yesterday that her lung has collapsed and the doc thinks that radiation to the tumor will open it up for her. There is no spread outside the lung at this point (thank goodness)

She has not had radiation to her lung as of yet due to the tumor not being visible for so long - I will be bringing a copy of the report home with me today and will be able to let everyone know more after I question the doctors. Not sure if she goes in today for markings for the radiation or what. Her first line of chemo worked so well with minimal effects and am wondering will they use the same chemo treatment after her radiation?

Mom says I am so nosy :) thanks for all your prayers and will keep you informed

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Thanks again to all of you that have responded to all my questions, fears etc on the threads I have started - not sure WHERE I would be without this website (maybe in nervous-breakdown land?)

I am getting the same feelings I had in the beginning of hopelessness and I know that we have made it almost a year with great results and all I can do now is support my family and pray to God that we get thru radiation treatments with not too mcuh pain....

Its so hard because right now she is NOT in pain except she has a little shortness of breath going down the stairs to do laundry - I just dont want to see her in pain - but...she said she will do whatever she need to do to try and beat this.

One of the Nurses at Pluta Cancer Center gave her a CLEAR ribbon to wear and told ther that is what we are going for - TO CLEAR THIS UP

please pray and thanks again and love to you all

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