Commonsense2265

 Unfortuantely my dear that is normal..Just do the best you can as it is very difficult for your mother and yourselves.  There was a previous posting last week on this under the brain tumors so go check the previous posts.  Elaine

On 3/24/2007 Dothedewmom wrote:

My mother is in stage IV ncslc with mets to her lymphnodes,trachea and one adrenal gland. She has had three rounds of chemo Alimta. Often times she will be talking and forget what she was talking about. Now I know we all do this from time to time. But she will do it several times a conversation. Great example.. my sister is 37 and has moved back home due to sever complications with diabetes. Anyway she is taking an antibiotic through an IV and she needs help in hooking it up. Yesterday my mom was trying to rest and she couldn't..the dog kept bothering her, the phone kept ringing and so on.. anyway my sister comes and asks if she's about ready to help with her Iv. Well mom jumps her case claiming she just wants to rest. Well about 30 min later after my sister managed to do it herself, my mom comes out of her room and asks her if its about time to do her medicine. Seriously. So long story short are these kinds of slip ups related to chemo or stress or what. If anyone else has experienced something like this please let me know. I'm sorry I had to ramble but I felt it was necessary to explain this situation. God bless all who are battling this terrible disease.

 Rhonda: Sorry to here of your situation and that of your MIL. She will need progessive constant care as her health fails.  If the treatments are not working, you loose your bones, can't walk or lift your arms...I am speaking of end stage (Been there and recovered they have not written the book on my case yet!) I would have a live in companion if she can afford it then as she progresses down hill hospice in the home.  This all depends on your monetary situation.  It is physically very difficult to care for an end stage MM patient when they loose their functionablility.  My husband coped but I tell you some days I wondered.  I had to wear a diaper as I could not make the toilet in time. I used a walker but could hardly hold on .could not raise my arms.  You see the spine ususally gets very compromised.  If you are interested in alternative treatment let me know  by another post as that is what I used but it does not work for everyone. All the best Elaine

On 3/24/2007 Rhonda Lynn wrote:

Hello....My dear mother-in-law (age 74) was diagnosed with MM 16 months ago.  she has gone through chemo, blood transfusions and Velcade treatment.  She lives alone and has always been a healthy, active, social person (she cared for my father-in-law who died of lung cancer 4 yrs ago).  She wants to keep her independence does not want home care in her home unless she absolutely has to. (does have some nursing visits).  She is getting very scared....her bones are aching, she is getting constant nose bleeds and sleeps most of the day.  My question is...without losing her autonomy, how can we make sure that my mother-in-law gets the help that she needs - as well what are the signs of the final stages of this disease - we are not sure what to expect or how long she has to suffer or what we can do to alleviate her suffering?  Thank you very much for listening. 

 Hello Lms73:

I did a post previously on the message board on this subject but will be happy to repeat.  MGUS is the precursor, often to Multiple Myeloma.

You can have it for years and nothing gets worse but tehn it takes of and develops a more serious form..YOur red blood cells do not form properly.  MY mail cousin had it 9 months ago and now all symptoms are gone..I will write a suggestion here and if you wish to do something send an email and I will give you further details..He took a natural supplement poly mva and in 3-4 months of low dosage it was taken care of.  Now one has to keep taking the poly mva 1-2 tsps day to keep it away.  I myself had end stage Multiple Myeloma and used this supplement and truly am a miracle.  I am in total remission when no one gave me a prayer of living.  I probably had MGUS for years but did not know it. I suggest you look under the Multiple Myeloma posts for March as there are several postings from women there.  All the best..Elaine 

On 3/24/2007 Lms73 wrote:

Hello,

I was diagnosed with MGUS in 2000 and at the time wasn't given much information on the condition - so i didn't worry about it too much.  I was tested again a week ago for the condition and my levels of IgM have increased....from 4.28 g/L in 2000 to 4.56 g/L when tested last week (Mar 14, 2007).  My doctor knows very little of this condition and has referred me to a hematologist, who i've yet to see.

I am also hypertensive (on meds) and have high blood sugar levels (diet controlled). 

I have read everything i can get my hands on about this condition.  I can't find any information on women of my age with this condition.  It's very frustrating to say the least.  I have so many questions.  Can anyone out there shed some light????

Thanx, Lms73

 Alice you might want to go online and check out Loma Linda University in Riverside CA, they have some of the best results and no lethal treatment for Prostate cancer.  A very high remission rate. People from all over the world go there.. So just check it out it is online.  

On 3/22/2007 Amam5516 wrote:

Hello to everyone!  My father was recently diagnosed with pc at the age of 65.  we recently found out his psa in 2005 was 20 and is now a 40 (the first result was overlooked by md).  We have spoken with two urologist thus far.  He had a prostate biopsy done last month (nine positive biopsies out of fourteen).  The urologist also performed a PAP (prostatic acid phosphatase?) and his score was high at 5.0.  Urologist are basing treatment that cancer is in the lymphnodes.   Lymphnodes are not swollen.  Gleason scale result is 6.5.  Has anyone heard of the possibility of removing lymphnodes and testing for cancer?  Any information anyone can give me will be greatly appreciated. 

 

My father will see the chemotherapy and radiation doctors next week but we are all on pins and needles NOW.

Alice in Alabama

Appa: never give up hope, be happy and take your husbands benefits please.  That is what the military is for to provide for spouses. I am sorry this happened to you...Unfortunately  some family and friends freak over cancer and dissapear.  Take care of yourself and be happy.. 

On 3/23/2007 Apa85204 wrote:

I just wanted to post an update.  I'm back home on the east coast.  I didn't get the warm reception from my family, but that's ok.  I really didn't expect it.  I'm starting what's left of my life over.  I have a job now I have to find a place of my own.  I don't have any insurance so I'm not taking treatment anymore.  It was inoperable anyway.  I'm hoping to have at least a year, maybe two before I get sick.  It's been 6 weeks since my last chemo treatment and finally I'm getting my eye lashes back!!  Yippee!  I have to shave under my arms again!!  :) Now, when I can stop wearing the head coverings I'll be a happy girl. Ironically, the man that left me, my "husband", joined the Army.  Can you believe that?  I guess he needs it.  It's probably a good move.  The discipline will do him good. I am entitled to his military benefits, since neither of us filed for divorce but I don't think that I'm going to pursue it. I just wanted to thank you again for being supportive when I was so alone in the world.  I've read through some of the other boards and postings and I want to say again that this website is truly a blessing.  Thank God for this outlet when there is so much pain, confusion and anxiety regarding this dreaded disease. God bless you all!!  Take care!! :)

 I too believe the Cancer treatment Centers of America do a wonderful job.  to find out more go to www.cancercare.com  gives you a different perspective.  They have wonderful people who can answer the questions you have posted here.

On 3/22/2007 Lou38s wrote:

2nd opinion. The Cancer Treatment Centers of America go with chemo and radiation. I am not advertising for them, we just ended up there. If you are strong enough, they will do the chemo and radiation. My husband has survived 2 years with this. We have been part of CTCA for a year. Anyone, with any type of cancer, recieved the dual treatment. If you have not had radiation before, then there should be no reason for to be denied this treatment. ~~~At this center you gain a great deal of knowledge just through other patients and thier treatments. NEVER have I heard of such of thing that radiation could "fuse" the tumors - - - or make the cancer worse. It sounds absolutely absurd. If the patient is strong enough, ANY treatment is available.

I keep reading your post over and over - it makes NO SENSE what that doctor said to you. Is he relying on ignorance for his "prognosis" to be acceptable? That statement is soley directed towards the doctor. Radiation, wether it be high doses, or the "standard" has side effects with possible burning to the skin. It is suppose to (in laymens terms" ) burn out the cancer. It does affect the good cells, just as chemo - but certainly does not "fuse" anything together.

I would suggest researching - there is alot of info out there and we have have all been searching endlessly for answers. Research symptoms and treatment options and go back to that doc armed with the "whys" "whens" "how comes" and WHAT? HOW?  Something is not right. As I said, we have been surrounded for the past 2 years with patients and clinical trials, filled with so much info we could explode. The doc may take your 2nd opinion request as just 2nd guessing him. TOUGH! It's the life of a sister, daughter, best friend -  whose life depends on getting every available option there is.

God Bless - - You all can do this!!!!!

 

 I too am curious about Witchdoctor.   I have seen you post on yahoo answers. While we all share different experiences, sometimes unless you have been there, it sounds good or the right thing to do.  Everyone is an individual and everyone reacts differently to treatment.  Not only am I a cancer survivor I also was an oncology nurse.  I do not disagree with your post, but also want to point out that trying chemo first, is not all bad.  Wait till you have all your white cells wiped out by 10 days of radiation, you will understand, that the 2 together cannot always do the best job. In other cases it is ok.  It should be based on the cancer, health of the patient, staging and many individual factors.  commonsense2265

On 3/22/2007 Sarany wrote:

Are you an oncologist?  What is your specialty?  I'm just curious.

 At this stage the doctor probably is doing your dad a favour.  Going thru that area affects not only the esophages, but it would be very hard on him.  I had radiation through the sternum area for Bone cancer and it wrecked my stomach and my heart.  So the chemo will be more than he can handle.  Liver mets is a tough one.  The white cell count gets trashed by chemo then to put radiation on top Waay too much..I think your doctor is ok.  It is not easy to watch a loved one be in this position but there are things you can do.  go google natural medicine or alternative medicine for his type of cancer, adding those things can help. boosting the immune system to help fight disease.  I use epicor.  read the history on that supplement.  Without immune boosters I would not be here. All the best to you dad and what loving daughters he has.  Elaine

On 3/21/2007 Debbyw67 wrote:

Hi Sara,

You beat me to the punch.  I can't believe we are both here.  Hope someone can offer some advice.

 

Debby (your sister)

 Casey:

Let us hope a lovely spring wind will come to soothe you.  What a great sadness you are suffering. Our prayers are with you.  It is so hard to loose a parent suddenly, even if you know they are ill. YOu will be lost and saddened for a long time.  And it is true time helps us with our sorrows but we never forget we usually just handle it better. Both my parents are gone, my Dad died suddenly of a heart attack, young, so I feel your pain.  These things just make us stronger.  I had been through a lot before I came down with "no cure" cancer but it made me stronger and here I still am, so Never give up. someone always cares...Elaine 

On 3/20/2007 Caseysummerwind wrote:

It is with such a heavy heart that I tell you my Mom (my best friend) died on March 3 with Stage IV melanoma.  It was only 3 1/2 months from first diagnosis till we lost her.  She did the radiation route and was on a 42 day protcol of Temodar since it had spread to her head.

Please keep me in your prayers as this is so over-whelming for me and the rest of our family.  Mom was never sick a day in her life,  We had a big party planned for my parents 50th anniversary.  It's so hard because we lost my brother on Sept. 11 - he was a FDNY firefighter.  As a very close family we were just coming out of the fog of losing him.

I will pray for all of you out there.  I know the day to day struggle of trying to do EVERYTHING to make your loved one better - the best research, the bets doctors, and the daily caregiving. Sloan Kettering dtrs were good as well as local oncologist.

Family is the most important thing - so continue your journey and may God bless all of you.

Feeling a bit lost....

 You are so correct and when the brain is interferred with things change.  You cannot take it personally.  It is someone else doing the anger. The part of the brain that controls those impulses is either inflamed, missing or diseased.  I will never forget my first experience as an RN with a head injury patient.  No one wanted to look after him, I felt so bad for him. He was violent, angry, had a vocabulary he did not know existed etc. when he started to get better he was so embarrased at his behaviour.   This was an accident patient so a Brain tumor is not going to recover the same. You are going to have to do the best you can. The message below has some wonderful information in it..Take care

On 3/21/2007 Gaylec wrote:

My brother had an accident in which his front lobes were severely damaged.  He was changed in that he was very angry and blunt in his conversations and very hurtful to his family.  Damage to the front lobe will do this.  In my brother's case, he has had a lot of therapy for this particular problem, and he is doing better, but it took a long long time.  And this is with his front lobes destroyed.

 Please see what your doctor can do or recommend -

What other treatments is he on?  Temedor?  Avastin?  Where is he getting treatment?  Our oncologist refuses to give timelines, until such time my husband is clearly in the terminal stages.  On the west coast, I would check with Dr. Desalles or Tim Cloussey, at UCLA.  Other people here have had good results at Duke or MDA - after given grim prognosis at their local hospital.

 There are some resources you might find helpful on www.clinicaltrials.com

 In the meantime, try to remember (and it is hard to do, as some of the attacks by your loved one can be brutally personal) that the cruel talk is from tumor damage - and not what your loved one would really say or do if healthy.  It is a very stressful and hurtful situation, and unfortunately, the ones closest to the patient get the brunt of the anger.  My husband was kind of mean to me during radiation treatment, but has cooled off a bit.  He also realizes that he has to lighten up on his daughter.  So we are a work in progress as well.

 God Bless and good luck

Gayle - wife of John, GBM warrior since September 06