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WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

This past Saturday I took my mom who is 59 to the ER because she has been having severe headaches, loss of hearing in her right ear & most recently stabbing pains in her left eye. It took me 2 weeks to convince her to go. They did a CT scan and found abnormalities in her Cerebellum they warranted a MRI where they found several masses in her Cerebellum. My mom is a long time smoker so they did a chest x-ray where they found a small mass in her lung. She is currently in the hospital undergoing testing. The oncologist suggested full brain radiation and then Chemotherapy & they are currently giving her steroids to reduce the swelling around the masses in her brain. I have never dealt with anything like this before and I am scared to death – I don’t have much support from my husband because he doesn’t deal well with situations that require compassion. I am trying to be strong for my parents and I don’t want to break down but I can feel it coming. We don’t have a confirmation that it is cancer yet because the biopsy results have not come back but the Oncologist was 90% sure it was. I just need some direction in how to deal with this and some info on what is to come.

dmcl11
Posts: 22
Joined: Feb 2011

I am very sory to hear about your mother. I was diagnosed with lung cancer in oct 09. i had radiation [35 ] treatments and chemo [4] rounds.It was successful in destroying the tumor. about thre months later i bad headaches, went to hosp had mri that showed lesion on brain one large one in the back of my head which they removed surgicly and a smaller area on the right side of my head that they operated on with a thing called gamma knife which i understand is a radiation of a kind more localized than full brain.to make a long story short that was all 6 months ago and i have had 2 ct scans and 2 mris so far that have been ll clear.There is much hope for your mom.by the way iam 55yrs old and did smoke until oct 09.good luck to you all

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

Very sorry to hear your news. My wife has had small cell lung cancer and is now in remission...all you can do is make sure you have a good team of doctors and make sure that you can trust them!...prayers also do wonders!....sending many prayers and strength your way!

angelyn's picture
angelyn
Posts: 51
Joined: Jan 2011

My mom was diagnosed with SCLC in Feb of last year and I also felt lost and confused. Find a doctor and a clinic that you can trust and has had good results with cancer. You can do this for your mom! I am an only child and I am still scared #%@#less some days. At first I cried alot so I went to my doctor and got help so that I could help her. You will have good days and bad but you will make it.
You can also get alot of good information from these discussion boards. Don't go by the stupid statistics on the internet cause most are grossly out of date.
Good luck and let us know what is happening. Lots of good people on here to help you.
Praying-
Angie

lynntaylor
Posts: 39
Joined: Mar 2011

My dad has recently been diagnosed too (within the last 3 weeks). I have been reading and researching everything I can get my hands on. It has helped me feel more in control. This site has been great. Lots of very encouraging stories and support. I have stopped surfing the web for information... too much, too overwelming... and probably not accurate. I am finishing a book that I think is encouraging... not a lot of medical information, but may help your state of mind... it has helped mine. It is "Help Me Live; 20 things people with cancer want you to know" by Lori Hope. The author is a lung cancer survivor. My thoughts are with you and your family.

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

They took the biopsy yesterday and the Radiologist told my parents that they would have the results today as long as he got enough for the biopsy - if not then he'd have to go in w/ a bigger needle today - We nothing happened - No results - No 2nd biopsy - So at this point we still do not have a for sure diagnosis of cancer - all through like I said in my 1st post the oncologist is 90% sure - I've been reading other posts on here and have found useful info but I've also found alot of sadness - I'm not sure what approach to take with this - I want to be positive and avoiding the sadness seems to be the way to do it but I want to be infomred so I know what quesions to ask and what to expect - My mind is spining out of control and I just don't know how to slow it down - I can't imagine life without my mom.

3Mana
Posts: 829
Joined: Aug 2010

Hi,
Just read your post. I'll say a prayer that things go good. I have gone through this many times, so I know what you're going through. My mom passed away in 1989 and I still miss her every day. Good luck & try to think positive and like everyone says, just take one day at a time. We're all here to support you so keep coming here, okay?
Carole

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

I just spoke to my mom and she said her PCP came in today and said "Well it doesn't look good ... if we would have caught it sooner" I want to know what right she has to come in and tell my mom that!!! Especially since the Oncologist hasn't been in to tell her what's going on yet - How dare you rain on my mom's positivity parade !!! I am so angry right now !! We still have no results on the biopsy which is making me even more angry - I hate playing the waiting game !!

Thank you to all for the support and kind words !!

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

Well, the Oncologist came through - Said the mass in her lung was so tiny they couldn't biopsy it so that is why they biopsied the lymph nodes - not because of her emphaszima - Said that he is confident they can treat it - Will start WBR inpatient at the hospital tomorrow and another session Friday then should be released - and will continue WBR for 8 more sessions - They are also going to treat the lung cancer with Chemo but we are not sure when that will start and for how long. I know she is not out of deep water yet and she has a long road ahead of her but she told me last night she is not going any where for a while so I'm holding her to that - I feel like I'm starting down the path to hope instead of the path to devastation and I will hold my head up and be strong because that is what my mom needs right now!!! With all that being said can anyone tell me what to expect with WBR and Chemo? What can I do to make it easier on my mom & what should we avoid?

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

So, the main Oncologist came in to talk to my parents this evening and told my mom that it was Stage 4 because it had spread to the brain - He didn't sound as confident as the other doctor was - I don't know really what that means all though the information I found on cancer.org in regards to the 5 year survival rate for stage 4 lung cancer did not help making me feel confident !!! Quite frankly I'm completely devastated

Kimmiann
Posts: 46
Joined: Feb 2011

Don't read Internet statistics...they don't apply to everyone and many of them are quite old. My father was diagnosed with Extensive Stage Small Cell Lung Cancer. Onc said 3-7 months with chemo or only weeks without but I am not God so I don't know for sure. Well dad went for the chemo and lived 17 months.

Everyone is different.

Kim

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

My mom got out of the hospital yesterday and they started her Radiation treatments - she said it only took 10 min and they didn't use a mask like they said they were going to - no sure why because she didn't see the doctor. She goes back at 1pm today for #2 and the doctor will be there. She said she's feeling fine except for being very cold - she doesn't know if that is a side effect to radiation, steroids or Ativan but she thinks it has to be be because she's always a hot person. I know that we are only at the begining of a long bumpy road but we will get through this - my mom has cancer cancer does not have my mom !!

Oh and I wanted to say how proud I am of my mom - She obviously knows she has to quit smoking and said that she has wanted to but hasn't found the motivation to do it, well she has now !! She hasn't smoked a cig since Saturday !! She also hasn't had a drink since then - I don' t know if I've mentioned it but my mom is or should I say (hopefully) was a heavy drinker - hard liquor. They told her she could have a few drinks but not to over do it but she decided she wouldn't have any at all! It brought tears to my eyes in both a good and bad way - I am proud that she realizes she needs to stop drinking but I'm saddened that it took her getting diagnosed with cancer to come to that realization - But regardless I am proud of my mother !!

Kathyl768
Posts: 13
Joined: Mar 2011

Oh sweetie , so much to swallow. Appears your mom is a strong fighting woman and this is real good . I was told one year ago I had stage 4 lung cancer spread to several areas of the bone. Just take one day at a time . I will say a prayer for your mom and all of us who face this battle. God bless you and your mom.

grama17's picture
grama17
Posts: 14
Joined: Mar 2011

Have read all of the updates and it seems that you are the best medicine for your mom right now, in addition to all of the medical medicine she is getting. Is a very hard time to stay strong, but it sounds like you will find it within yourself.
I would suggest getting rest when you can so you can stay physicialy strong also.
God Bless

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

My mom completed 10 sessions of WBR & visited her Oncologist on March 31st - he told her she has aprox 15 months to live - but really how can he even know!! He does not paint a very nice picture at all & my mom just doesn't need that - She told him she would be switching doctors. The new doc has ordered a PET scan to find out where all the cancer has spread besides the already known areas - I'm not sure when this will happen because she had to reschedule it but it will be within the next week. She goes to get her port put in on the 11th of April and Chemo will start the following Monday - She kept telling me she didn't want to start Chemo until after her birthday which is the 14th - We are throwing her a big 60th birthday party !!! I'm really praying this isn't her last birthday !!!! Any way - mom flew through radiation with limited problems - sore throat which she still has and she has now lost her hair. But thanks to a link on the ACS's website we were able to get her a wig for free and it is exactally like her hair, well almost just a little darker. She is hanging in there and being strong!! I just hope the Chemo does it's job w/ little side effects !!! Thank you for all your support !!! I will keep all posted !!!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I am so proud of your mother for switching doctors instead of believing what her oncologist told her!!! It shows she is a fighter and isn't going to let this horrible disease defeat her.

Celebrate her birthday with her and don't let cancer spoil the celebration.

Stay strong,
Glenna

sleepless in jersey
Posts: 185
Joined: Feb 2011

WorriedinPA~ Hope Mom has a great day!!!
Very proud of her for switching as well, keep up with the positive attitude and prayers.
My Mom turned 60 in August and it was a great day and had a nice surprise family dinner at a Italian resturant.
Was DX on Jan. 3rd 2011 stage 4 adenocarcinoma (lung, spine, brain and pelvis) send pathology out for gene mutation to see if Mom can ever go on trial drugs?

Hang tight have a good day with her and we'll be here for ya tomorrow...sleepless in jersey

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

Sorry I haven't been on here in a while but things have been busy --- Mom just had her third round of Chemo today - She hates it because it take to dang long. She had a scan the other day and saw the doc before the treatment today and he said there is still "something" in her brain but he doesn't think it's active and isn't worried about it but will send her for a PET scan next week. Since her 1st Chemo her Cancer Number has dropped from 14 to 10 and he would like her at 7 & has scheduled her for 2 more rounds of chemo. I have tried to find explanation as to what a Cancer Number is but I can't make heads or tails of it on the web - so if someone can help me out it would be so much appreciated. With that being said it brings us to side effects - Of course she is lost her hair and appetite, but she is also having really bad pains in her legs and feet - she has discussed it with her doc but he didn't seem to concerned and told her to take Motrin but that isn't helping so she's been taking Vicodin, which helps but not for a long time - Any suggestion? Also, I was wondering if anyone know if drinking has any negative effects on the treatments?

AlanRinHBG
Posts: 120
Joined: May 2011

vicodin and alcohol? yeah right.

lynntaylor
Posts: 39
Joined: Mar 2011

My dad had really bad leg/feet pain as well. He is on taxol/carbo. It was incredibly uncomfortable for him. His doc put him on Lyrica... I think it's a drug normally prescribed for fybromyalgia (don't know if I spelled that correctly). They also put him on a anti depressant/appetite stimulant that REALLY seemed to help with his mind set and appetite (don't know the name of that one... but I think it has THC in it). May be worth asking her doc about.
Oh.. and i've never heard of the cancer number thing..??
Best wishes to you and your mom..
LT

AlanRinHBG
Posts: 120
Joined: May 2011

Hi guys, I read all your posts. Good for her to change drs. Her case sounds alot like mine. I'm 60, smoked a pack a day for 35 years, and oh yeah, loved my jack daniels. I quit cigs 4 years before cancer got me. I went through radiation, chemo etc. total treatment time was 7 months. I had no surgery.and cancer is in remission. My cousin has a brain tumor and getting 30 radiations. Drs. told them that alot of small doses over time is safer than stronger short bursts. I don't know much about that. I've been told that lung cancer moves to brain and bone if not caught early. I also have bad emphysema too. I have to use advair. You sound like a strong and faithful girl. Your mom is lucky to have you near. I've met lots of patients with lots of different things happening to them. I'm amazed at the grace and even humor they present. It's a reality check for sure. The important things in life start to become clearer. Stay by your mom and offer her smiles and hugs. She will get through it. Drs. said I can have a glass of wine or 2 but better ask them. I've been in remission for 17 months now. Waiting for results is just part of the frustration. Outside labs, holidays etc. Not to mention the volume of cancer patients. I am sorry for all this chatter, it's because I feel your pain. Alan inPa.too

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

It sounds like her doctor is keeping his eye on a tumor marker - the level of certain substances in the blood that can indicate (by rising or falling) the presence of new tumors or the disappearance of a tumor. It's not a foolproof or definitive test by any means, but just one more tool the doctor uses to help keep track of your mom's cancer. My best hopes and wishes,
stayingcalm

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Repeat

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Sorry, repeat!
*thing to remember: Impatience does not make the site move faster!

sleepless in jersey
Posts: 185
Joined: Feb 2011

Your going to cause a whole lot of havic now...I have'nt heard from you in such a longtime and I use to read some of your foreums to my Mom, and now she asks me has she been on yet??? Keep saying no...So im sure her mind is playing games with her, but she's going to be happy as well as I am that your BACK...LOL (sorry not on FB either)

Sorry Worried in PA.~ didn't mean to take anything away, but Mom doesn't have the leg pains, however she gets the RT. shoulder pain and crazy enough the xtra strenght Tylenol helps. So crazy. She also does drink during treatment I think they said it was OK to have a glass or to of wine. However Mom was drinking her red wine (how could she not we make it at a wine school), but since she became a diabetic during this hole havic her sugar levels were not good so she switched her cocktails vodka with seltzer and that seems to be OK.
Please dont get me wrong she is not an alcoholic she just likes to have her couple of drinks on the weekends or a family function.
Stay strong!
Lots of prayers your way...sleepless in jersey

WorriedinPA's picture
WorriedinPA
Posts: 10
Joined: Mar 2011

I have not been on here in so long -- life has been very busy for us -- my mom is still hanging in there -- it's been one year since diagnosis -- since my last post they found that the cancer had spread to her lower spine which caused her much pain and made her pretty much unable to walk -- They radiated that area and it worked thank god!! She still has a very minute spot of active cancer in her lung and for that they have her on oral chemo med, Tarceva which she's been on since December -- she didn't do well with IV Chemo (to many debilitating side effects) She is very unsteady on her feet and has the tendency to fall & did so a few months ago -- banged her head & face off the pavement -- since then she's been experiencing pain in her neck (around the hump area) ... her doctor put it off for a while then when she had a scheduled MRI noticed something funny there -- but on the CT scan did not notice anything -- They couldn't for sure say it was another spot but due to her history (lower spine) decided to treat it as if it were another spot -- Problem was that since she previously had whole brain radiation they were afraid to radiate that area due to it's closeness to the previously radiated area. She was sent to a neurosurgeon for a consult to see if surgery was an option (I am guessing because they didn't actually even explain why they sent her there) He said he couldn't confirm it either but he did see something -- suggested radiation and not surgery .. so 3 weeks ago she started radiation & since then her pains have become excruciating & her unsteadiness has increased by 90% to the point she cannot be left alone at all. They put her on Fentanyl patches & Lortab which did nothing -- I had her in the ER last Saturday because she woke up on my guest room floor in a puddle of pee -- she can no longer hold it & since she couldn't get out of bed unassisted she had no choice but to pee in the bed & on the floor .. I never imagined it would get this bad to where I'm changing my mother's diaper and I can't imagine how she feels about it. Anyway at the ER they gave her a shot of Dilaudid which instantly relieved her pain & sent her home with a script for Oxycodone which helped way more than the Lortab -- Her Oncologist increased the pain patch at her next visit. She has now developed a severe sore throat, which is what we beleive related to the raddiation however she is now a week out from that and it's still very sore .. she has been unable to swalow her pills so I called for a liquid pain med & they put he on Morphine which I am unable to get at any local pharmacy -- they had to order it in so my mom is currently on just Lortab crushed in apple sauce - but she seems to be fairing well without anything else so I'm thinking her pain is subsiding a little & she informed me my father refused to permit her to wear another pain patch because it's messing with her mind. So, without that patch and limited Lortab she's doing ok in the pain dept. However, she is still having issues with ambulation .. she can walk assisted w/ a walker but someone has to be right along side her because her legs will just give out with no warning. She says they feels like jello & no matter how much she tries she can't get them to move. I initially thought it was to much narcotics in her system but since she's not on very much any longer that can't be it. Well she goes for another MRI tomorrow and her 4 week follow up with her oncologist on Tuesday and then we will be flying off to Chicago to the Cancer Treatment Center's of America for a second opinion on what options she has going forward & what they can do to make her remaining days joyful or at least bearable -- I'm counting on her holding out through Christmas -- this was my initial goal for her and she did it so we are going to keep on trucking -- but if it get's to the point where it's not worth it then what do I as her caregiver do to aid her to the other side so to speak? I don't want to see her in pain like she was last week again. No matter how hard it is on me to loose her I can't expect her to keep on keeping on in pain. And when the time has come how to I remain strong for my family & how on earth can I explain it to my 3 year old sons? Sorry so long but it's been a long long time since I've posted so there was alot to cover :)

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