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Mama so sick

ioanitsa's picture
ioanitsa
Posts: 4
Joined: Oct 2012

Hello to averyone, I am new in this board and I'd like to wish you all courage, faith and strength to your battles!

My mama was diagnosed in end of August with stage IV colon cancer with multiple mets in liver both lobes and lymphs around liver.

After the shock, after crying a lot and starting taking pills to relax, I decided to fight against this.
Then I started going to various doctors (despite the docs my parents were visiting), and also one good surgeon for liver who was working for 10 years in Mayo Clinic.

All docs opinion is inoperable and start chemo immediately, without giving hope.
Of course, in the beginning I did not have hope, but since I decided to fight it I am trying to have faith and think positive.

She started first chemo, oxaliplatyn, dextrosse, leucovorin and 5-FU (I think it is Folfox 4???) but received only half as in the middle had a lot of fever.

Now she has done another three complete with the Vectibix added (wild-type K-ras).

First treatments always fever, docs said was from the cancer (probably from the liver).
Another problem dissappointing us a lot.
Now, thank's God, no fever, but many side effects.

Although seems that now the tumor in the colon has been decreasing so she can now go to the toilet and avoiding for the time being an ileum, she goes abt 10 times after treatment, without having diarrhea.
So, I imagine, does any substance from what she eats stays in her body??
Of course, has no appetite and the great problem for me is that I cannot change her diet as I would like to, like vegens, fruits, juice with vitamin C, milk thistle, nuts etc. because doc said that since there is the tumor in the colon we have to be very careful to her diet.

As I am not from the US, I do not trust docs here, because when they see a patient with cancer stage IV, they tells you always the bad thing.... :(
But I can no longer listen to the doc saying how much difficult the situation is and whatever I propose to him is always negative.

I proposed RFA, chemo directly to the liver (which cannot be done as we have also the tumor in the colon) and he is telling me that we must complete 2 rounds chemo first and then see if we can do anything else.

Although I know, that I should have patience with this damn sickness, I am afraid if we are losing time only with the chemos.
I have also talked to German doc for hyperthermias and I am abt to convince my mama going, but everyone here says we must complete 1-2 rounds of this chemo first.

How do you seem all this treatment, is there any possibility only with this chemo have some good results?
I know that this chemo is the most aggressive for colon cancer isn't it?

The matter is now, that after 3.5 treatments mama is not feeling well, her hematological results are not good, feels fatigue, nausea, right now stomach pain, and the worst for her is the itch in her feminine area and in the mouth.

How can I help her with these side effects, having in mind that cannot eat various food because of the colon tumor and also cannot take various pills because of both the colon and the liver (for example, she cannot take immodium because of the colon, doc said).

I am so sorry for this long e-mail, but I have so many things to ask and no one can understand me here.

Also, my mama decided to fight also, after asking the doc "how much time do I have, if not doing chemos?".

But now she is very dissappointed and I do not know what to do for her.
BTW, my mama is 51 years old and I am 31.

I cannot handle watching her like this, I feel I have to protect her like she is my child, as she would do.

Was any other patient to this situation, having no surgery in the beginning and having good results only wiuth chemos?

Thank you in advance for yr replies, hoping all the best for all patients!!

ioanitsa's picture
ioanitsa
Posts: 4
Joined: Oct 2012

OMG this msg is huge, sorry for this.... :)

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

Don't ever worry about the size of your post. We understand the need to get it all down.

What country is you mom in? That information will help those here to offer their experiences.

There are many stage 4 persons here who are living fairly good lives while treating their diaease. Many also have lived much longer than doctors originally expected.

With stage 4 it seems to be usual that chemo or chemo + radiation is the standard treatment. In some cases it can make enough differenece to be able to do surgery later.

It is good that you are seeking out information about various treatments available and questioning doctors.

Has she talked to her doctor about the side effects of chemo? There are medications which might be prescribed to help with some of them. The ones you describe are not unusual. Some folks find that after chemo they are very fatigued for some days or longer.

Hopefully those who have direct experience with the specific chemo you mention will post here to help you.

Wishing you and your family best outcome for your mom.

Marie who loves kitties

ioanitsa's picture
ioanitsa
Posts: 4
Joined: Oct 2012

Hi lovekitties, thanks for your response.

We live in Greece and medical system here s@cks.

I wonder why they have not prescribed radiation to my mama.
Are there patients with CRC and mets in the liver that have radiation together with chemo?
Then you gave me a good question to ask doc.

Wishing you also all the best for you and for the ones you care!

scared99
Posts: 73
Joined: Jun 2012

Ioanitsa, My mom was diagnosed stage 4 in June of this year. Started receiving radiation immediately for a sacral met. She started Chemo in August of this year and made it through 4 treatments. Had some set backs because of platelets, a horrible bladder infection and clots. Her last chemotherapy was in Sept and she plans on restarting again with her new oncologist. I think its very important to find a doctor that cares. Her first doctor was the head of a rather large oncology center and it seemed like his ego got in the way of finding a treatment that was suitable for her. When she was in the hospital he didnt even check up on her and her last 2 visits with him were rushed because he was heading to conventions. Her new oncologist is at a smaller hospital but his bedside manner is 1000 times better than the last one.

My mom could not get surgery either and when she was first diagnosed I feared she would not last more than a few months. Here she is 4 months later and other than some clots she is still in good health.

She takes several supplements to help with some of the side effects. She take a potent pro biotic to fend off any fungal infections, a cranberry supplement to fend off urinary tract infections, vitamin d, vitamin b12, and melatonin.

clarice16
Posts: 7
Joined: Oct 2012

hi, i am in almost the same situation im 30 and my moms 50 and she was also diagnosed in August of this year. They did do surgery a right colectomy on sept 17th but we found out that they did not get it all. She has 2cm left in her colon/psaos muscle that they cld not remove due to complications, so she is also stage 4....she will be getting a port placed friday and will be starting chemo soon after. Im scared because i know how hard chemo is on your body and it makes you very sick. My mom also has MS and the oncologist is saying they may have to take a little different route as far as the chemo and which ones.

Im so sorry to hear about your mom , i really do know how youre feeling, it is devestating because we want to do everything we possibly can for them becasue they would do it for us. My mom is my bestfriend and i cant imagine not having her here. Ive done tons of research on the internet and have found that alkaline water helps so shes doing that. and also this macrobiotic diet she will start very soon. I know what you mean by losing time, i feel the same way. what prognosis did they give your mom?

Our moms are very young and its very scary. Do you have any children?

I have found that alone time by mysefl just to sit and pray and vent and let it all out really helps, becasue i try to keep it together and have a positive attitude in front of my mom. I dont want her to see me fall apart becasue im worried shell just wory about me and not herself and not focus on getting better.

Im here if you ever need to talk

spainmum
Posts: 29
Joined: Apr 2012

Hi Iovanitsa, my mom was dx a year ago, she didn't have surgery and is on the same situation that your mom, with a diet for not having blockage, she went to a nutricionist that recommend some vitamins and some foods to have a balanced diet.

Like your mother she had spread at the liver, but also lungs and peritoneum, the first tractament Folfox didn't work because there were progression on the lungs and a new lesion at ovary, but the second tractament (Folfiri + Erbitux) worked well with the liver one of the lesions shrink to nearly half of the initially size.

I wish you the best to your mother and you. Hugs.

Celeste

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

I had tumor in my colon and many in my liver when I was diagnosed at age 51. They told me I had two to three weeks without chemo 4 to 6 months with chemo, they suggested I go home and enjoy my time left without chemo. I chose chemo. They told me I would never qualify for surgery, I got my surgery 10 months later. I am now 53 years old. So there is hope.
I only had chemo in the beginning, I never had radiation, and I got my surgery 10 months later.
Hope exists, do not forget that.
All my best, keep in the fight with her against this cancer, do not give up!
Winter Marie

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

keep fighting because you never know what may be achieved. good luck!
prayers & hugs
judy

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