When do you realize the hill is too steep to climb

Mom 88 diagnosed MM sept. 20ll. All Dr. says is very advanced misdiagnosed over 2yrs. has most major complications. Hypercalcemia, renal low, anemia (hgb low) requir ing multiple, frequent blood transfusions, lytic bone lesions (large on femur,ischium, thoracic & lumbar spine (spinal cord stimulator + narcotics) had to be non weight bearing 8/5 to 9/28 cause passed out broke both ankles with surgical fixing & still unable to walk. c dif infection recurred X's 4 still being treated. No radiation or chemo done. Zometa IV x1 to loer calcium. Rest of family want her to have chemo/radiation I am retired nurse & don't agree. Mom has difficulty making decisions. gets anxious if you try to discuss treatment issues with her. What is wisest course od action?

Oh gosh - my deepest sympathies.
I am on Zometa 6 weekly.
I have had 2 courses of chemo - with disastrous results both times.
The first time (Dec 2006) I died twice, CCU for 3 weeks, minutes from having leg amputated due to necrosis.
Another 4 weeks recuperating from that - had to be flown by air ambulance to Odstock (a UK Hopsital specialising in burns for skin grafts. Had the gorgeous maggot treatment *yum*
Also skin fell off and left with open sores all over my back, legs, bottom etc etc
Flat on my back for 4 months.
My prognosis when I was diagnosed then was 20-30 months - still here LOL
Regular blood tests - pesky cancer count marching up slowly but surely resulting in further chemo this past May (2011) - had to be abandoned after 4 weeks due to side effects.
I was 51 when I was diagnosed. I am now 56.
I also have PMR (Polymyalgia Rheumatica) and am in constant pain.
My thoughts on your mum's predicament..............if she is already in poor health the chemo and radiation may not prove very helpful. She may experience very bad side effects as I did.
Very difficult decision to make - if I had your mum's health problems I think I would say no to further treatmeant and go for palliative care.
I wish you and your family all the best whatever decision you come to.

Mom also has neuropathy in lt leg & foot (severe). She is also & 11 yr. colon cancer survivor. Had chemo at that time with severe reactions but her health at that time was good. She turns 89 on Jan. 3rd.

Wow - she's certainly had more than her fair share of poor health.
I wish her nothing but peace
(((((big hugs for you)))))

I am so sorry to hear about your mom--this is a tough situation. In my experience, given her age and co-morbidities, you, your mom and your family should determine what is more important to her --quality of life or quantity of life. Part of this means coming to terms with her mortality and understanding the implications for both avenues. There are many palliative and supportive care options (not talking hospice but the full spectrum of supportive oncology) that can bring her comfort and allow her to enjoy her remaining time with you and ensure that she has quality time left. As you know, chemotherapy will be rigorous with an endpoint of eradicating disease--this avenue will be not focused on quality but extending her life. But that extension will be full of the complications and risks associated with chemo. It's a difficult and scary balance and not everyone will agree. There is no right answer here.

I wish you strength and courage to find what's right for your mom and to express it to your family.

Hi,

First, my thoughts are with you and your family as you look to fight this dreadful cancer. I know this can be very difficult and my hope is that faith and love help you with the most difficult times ahead.

I am a multiple Myeloma patient so please know this is the perspective from which I will answer your question. I am also younger than your mom as I was diagnosed on 12/31/08 at the age of 48. At time of diagnosis I was unable to walk unaided and was very sick. I had (have) large tumor on my sacrum, right illiac crest and left ribcage.

My initial treatment was pailiative,isince MM is incurable, radiation, (after 6 treatments I was walknig with a cane) which put my back on my feet and went on to have chemo ( along with Velcade, Revlimid and Dex) and after 4 treatment have a very good response, except I have bad neuropathy. I went on for a stem cell transplant.

I would follow the same route if I were diagnosed today......I have a reasonable quality of life, I am able to walk,work part tiem and have been in remission since October 2009. The question I have of you is what are you looking for....Quality or Quantity of life.

Given your mom's age and the damage MM can do I would follow the most aggressive form of treatment you can get. MM is a tough disease and I think that an aggressive form of treatment up front set you up for a longer survival time. Please weigh the side effects....Stem cell transplant is great but it is not easy and has risks.

In the end God Bless you, your mom and family. I hope you atre able to find a course of action that gives your mom a longer life with quality time. My best to you.

Maggie



Maggie said:

Hi,

First, my thoughts are with you and your family as you look to fight this dreadful cancer. I know this can be very difficult and my hope is that faith and love help you with the most difficult times ahead.

I am a multiple Myeloma patient so please know this is the perspective from which I will answer your question. I am also younger than your mom as I was diagnosed on 12/31/08 at the age of 48. At time of diagnosis I was unable to walk unaided and was very sick. I had (have) large tumor on my sacrum, right illiac crest and left ribcage.

My initial treatment was pailiative,isince MM is incurable, radiation, (after 6 treatments I was walknig with a cane) which put my back on my feet and went on to have chemo ( along with Velcade, Revlimid and Dex) and after 4 treatment have a very good response, except I have bad neuropathy. I went on for a stem cell transplant.

I would follow the same route if I were diagnosed today......I have a reasonable quality of life, I am able to walk,work part tiem and have been in remission since October 2009. The question I have of you is what are you looking for....Quality or Quantity of life.

Given your mom's age and the damage MM can do I would follow the most aggressive form of treatment you can get. MM is a tough disease and I think that an aggressive form of treatment up front set you up for a longer survival time. Please weigh the side effects....Stem cell transplant is great but it is not easy and has risks.

In the end God Bless you, your mom and family. I hope you atre able to find a course of action that gives your mom a longer life with quality time. My best to you.

Maggie

Thank you for your kind thoughtful response. So glad to here you are doing reasonably well & have been given time and quality. Truely a blessing. Mom is much more comfortable now that she is feeling stronger in her 4th week recovering from c diff infection (4th recurrence) Now tapering down from 6 wks of vancomycin. The wait will begin to see if the infection starts showing itself again. She is basically under full palliative care at this time. ..................................told her she will have to say if she wants to go forward with the chemo/radiation as we know the chemo could hasten her death. Yes this delima I wish on no one. It is not all doom & gloom. There is still lots of life & plenty of love & laughter in our home and Mom is the center of it all. We have been blessed beyond measure as our Father is 92 & in surprisingly good health.

RLS said:



Maggie said:

Hi,

First, my thoughts are with you and your family as you look to fight this dreadful cancer. I know this can be very difficult and my hope is that faith and love help you with the most difficult times ahead.

I am a multiple Myeloma patient so please know this is the perspective from which I will answer your question. I am also younger than your mom as I was diagnosed on 12/31/08 at the age of 48. At time of diagnosis I was unable to walk unaided and was very sick. I had (have) large tumor on my sacrum, right illiac crest and left ribcage.

My initial treatment was pailiative,isince MM is incurable, radiation, (after 6 treatments I was walknig with a cane) which put my back on my feet and went on to have chemo ( along with Velcade, Revlimid and Dex) and after 4 treatment have a very good response, except I have bad neuropathy. I went on for a stem cell transplant.

I would follow the same route if I were diagnosed today......I have a reasonable quality of life, I am able to walk,work part tiem and have been in remission since October 2009. The question I have of you is what are you looking for....Quality or Quantity of life.

Given your mom's age and the damage MM can do I would follow the most aggressive form of treatment you can get. MM is a tough disease and I think that an aggressive form of treatment up front set you up for a longer survival time. Please weigh the side effects....Stem cell transplant is great but it is not easy and has risks.

In the end God Bless you, your mom and family. I hope you atre able to find a course of action that gives your mom a longer life with quality time. My best to you.

Maggie

Leslie K My brother's name is Leslie. Well before we knew Mom's true diagnosis she was on so much medication and had had so much pain that we just wanted to find a way to keep her comfortable and eliminate as much medication as possible because her body was givinhg signs it had had enough. That is why the spinal cord stimulator was implanted (good pain control). Mom was never very outgoing and always most happy to be with her family. She spent 4 wks. in skilled nursing facility helpless and alone because we could not spend the night. Now she says she wants nothing to do with that again. She seems more afraid of being alone in a hospital cared for by strangers. We are facing the hard realities of this situation & at her age she could go through chemo/radiation & have a good response but in all likelyhood even if it prolonged her life some, don't know if the limited quantity would make up for the quality she will loose. Chemo would not be a knew experience fore her. Before she was healthy starting out (so to speak) & it still took her down (77yrs.) There was never a question about it before or after & it's been 11 yrs sense colon cancer. Being a nurse (retired) I know more than I want. My brothers remain in ignorant bliss (the devil is in the details). This is horrible. The choice however is slipping from our hands day by day. Again we will pray for your continued blessings & strenth for the fight.

Dear Danielle It is 3:48am in Ca., yet another sleepless night. Prayers to you in your struggle with this most awful scourge. I'll be up before I know it as Mom has Dr. appt. with Infectious Disease Dr. Being followed for ongoing c diff infec. When it starts up I notice the change in her condition immediately. Knowone else in the house notices those 1st. suttle changes but she & I. Her color gets dusky, skin looses it's luster, eyes look sunken even though drinking lots of spring water (loves water), sleeps longer, guieter, then fever starts, then diarrhea. No rest for either of us. Back to Hospital, labs go south & it's on from there. I feel so alone. I am in for a fight cause my 3 brothers are determined she is going to have chemo reguardless of her poor condition. Mom tried to tell the medical social worker that she couldn' talk freely with my brothers cause they would never accept it. Her decision has to be for her either way, not for us. Prolem is she is overwhelmed. Ever since the social worker told her her condition was terminal (I had no idea she was going to tell her that on that particular day) was kind of pissed at her cause it had not been brought up before by the Dr. He just had said very advanced & I said what stage and he said he did not need to stage it. All I know is IGg Kappa & 2 months ago M proteins were 4, 570, met all CRAB criteria (Hypercalcemia 10 mths 12.4, Anemia (4 blood transfusions since Aug. (bout to get #5) Renal (creatinine 2.2, bence jones proteins), Lrg lytic lesion about 3/4 length femur & wide, thoracic & lumbar, ischium metastatic lesions, transfering from bed to comode, to wheelchair,only up to walker occasionally with gait belt takes 5-6 steps. Still cute as can be & has skin soft as rose petal. I'm spent' Love my beautiful, strong, smart mommy no matter the road be paved or dirt. Blessings.

Danielle Walsh said:

I am so sorry to hear about your mom--this is a tough situation. In my experience, given her age and co-morbidities, you, your mom and your family should determine what is more important to her --quality of life or quantity of life. Part of this means coming to terms with her mortality and understanding the implications for both avenues. There are many palliative and supportive care options (not talking hospice but the full spectrum of supportive oncology) that can bring her comfort and allow her to enjoy her remaining time with you and ensure that she has quality time left. As you know, chemotherapy will be rigorous with an endpoint of eradicating disease--this avenue will be not focused on quality but extending her life. But that extension will be full of the complications and risks associated with chemo. It's a difficult and scary balance and not everyone will agree. There is no right answer here.

I wish you strength and courage to find what's right for your mom and to express it to your family.

Wow,I am so sorry to read about this, your mom is a special person.Being a survivor had to have changed her outlook on life. I know it did mine and now it starts again, I have been under treatment for several months and now the side effects start. Legs are numb and painful,can't sleep and can't get comfortable.After reading about your mother I feel lucky.also scared.

God be with you and care for you,may he abide with you and carry you.

I lost both parents to cancer in january of 93 they were young 59-64. still miss them

Greetings & blessings to you. Knowing what Mom goes through makes my heart ache for you in your struggle. Moms spinal cord stimulator takes care of the worst of her pain but may also mask warnings we need to be alert for. Rodney as a caregiver I witness the effects of you and Mom's illness daily and can only imagine going through it having lost both parents to cancer. God is already working with you & through you to carry on. Surround yourself with the love & care of good people, as you seem to be a good & caring. person. Fear is our natural instinct & fear of being alone our greatest. Hold on to those who make your journey easier & in whom you can share your vulnerability.

Wow,I am so sorry to read about this, your mom is a special person.Being a survivor had to have changed her outlook on life. I know it did mine and now it starts again, I have been under treatment for several months and now the side effects start. Legs are numb and painful,can't sleep and can't get comfortable.After reading about your mother I feel lucky.also scared.

God be with you and care for you,may he abide with you and carry you.

I lost both parents to cancer in january of 93 they were young 59-64. still miss them

So sorry to hear about your mom. Your brothers are being very selfish. I would much rather have my mom for a few months with quality of life than 6 months of seeing her go through chemo, etc. My mom passed from lung cancer within 3 months of diagnosis, she did go with chemo because the dr was not honest with us, we were told 3 months of chemo and then surgery to remove it. I know my mom and if the Dr had told the truth she never would have put herself through the chemo. My husband has MM for 5+ years now. It is an awful disease. We just have to accept that when God is ready to bring a loved one home no treatment will help.

Our Mother the most precious died on Feb. 8th, 2012 @ 9:30am proving that joy cometh in the morning. wishing all in this fighting arena the best possible outcome & a few smiles & laughs on the journey. The most common coment from Mom's homegoing celebration was people saying they have never laughed so much in their life at a funeral service. She was 89 but more young people spoke of the affect she had on their lives. She loved her life and fought for it every step of the way. Her Sister died 12 days before her. She never liked going anywhere alone and her sister knew it. Now that is love. RIP Mommie!!!!!

Wow. Thank you for sharing. May you find peace in your memories of her.

Tanks Danielle.

I am so sorry for your loss, we do so love our families. Quite often its a love that knows no boundry. May God bless you and care for you and your family, I pray he surrounds you with the envolope of his love so that you are ccared for and held tight through this storm. May he still the waters and bring peace for you.

RLS sai

Tanks Danielle.

I am sorry to hear to hear of your loss.
On the positive side your mum is no longer suffering and is in a better place.
Just remember the good times before she got ill.

The funeral service sounded like it as a hoot. Seems she was highly regarded amongst the community.

(((((hugs)))))



RLS said:

Our Mother the most precious died on Feb. 8th, 2012 @ 9:30am proving that joy cometh in the morning. wishing all in this fighting arena the best possible outcome & a few smiles & laughs on the journey. The most common coment from Mom's homegoing celebration was people saying they have never laughed so much in their life at a funeral service. She was 89 but more young people spoke of the affect she had on their lives. She loved her life and fought for it every step of the way. Her Sister died 12 days before her. She never liked going anywhere alone and her sister knew it. Now that is love. RIP Mommie!!!!!

May she be in peace and you have the courage to face her loss..

RLS said:

Our Mother the most precious died on Feb. 8th, 2012 @ 9:30am proving that joy cometh in the morning. wishing all in this fighting arena the best possible outcome & a few smiles & laughs on the journey. The most common coment from Mom's homegoing celebration was people saying they have never laughed so much in their life at a funeral service. She was 89 but more young people spoke of the affect she had on their lives. She loved her life and fought for it every step of the way. Her Sister died 12 days before her. She never liked going anywhere alone and her sister knew it. Now that is love. RIP Mommie!!!!!