Need your support

[daisydaisy]

Dear friends,
I am a caregiver to my mom (57 yo) diagnosed as T4N0M0 after the surgery (right hemicolectomy, December 05). No lymphovascular invasion, all nodes (11) clear, poorly differentiated histology. It has been a tough time since her colonoscopy on November 21, the tumour was sized 5x6 cm then, but during surgery - 12x8 cm. Her symptoms before surgery included fatigue, high body temperature in the evening and anaemia (haemoglobin of 100, when the norm is 120). Colonoscopy was the last on our list of tests, and she only agreed when I found a place where they administer sedation for it. Before that, suspecting something wrong already, I ordered CEA and CA19-9 blood test, and CEA was 23.76.
Now I am discussing the options of chemotherapy. A trusted chemotherapist suggested monotherapy with Xeloda only for half a year. I am planning to buy the first pack next week, I hope so much she will have no significant issues with it. Unfortunately she is not a very strong patient.
So far I decided to take one step at a time. Right now her suture is not doing well, probably, because she is overweight a bit, so hoping to consult a surgeon to take care of it.
I have read through many threads here, and admire everyone here for being so brave and able to support others. If someone may share a similar experience, with the same stage (I believe ours is stage IIb) and using chemotherapy, I would really appreciate your feedback. I have read tons of medical articles, but so far it only further confuses me.
Best wishes to everyone in this holiday season and thanks to everyone for your support! It is priceless.

[Bev G]

Are you a physician? I'm not sure I understand all that you have said. You ordered a CEA and CA19-9? Does your mother have a competent physician of her own? She is 57. Assuming she is mentally competent, she should be making the decisions about her care, not you. She should be discussing the chemo options with her oncologist, she is the one who will be taking it, trusting its efficacy, and dealing with side-effects. It is inappropriate for you to speak with a "trusted chemotherapist" to determine her chemo. It IS appropriate for you to get all of the good opinions you can to try to guide her, but it's her life, support her in getting the best opinions, and the best professional consultations available. You are most welcome here, and we will be happy to provide you with reasonable support and encouragement while you support your mom in her care.

Best wishes to your mom and you.

Bev

[daisydaisy]

Are you a physician? I'm not sure I understand all that you have said. You ordered a CEA and CA19-9? Does your mother have a competent physician of her own? She is 57. Assuming she is mentally competent, she should be making the decisions about her care, not you. She should be discussing the chemo options with her oncologist, she is the one who will be taking it, trusting its efficacy, and dealing with side-effects. It is inappropriate for you to speak with a "trusted chemotherapist" to determine her chemo. It IS appropriate for you to get all of the good opinions you can to try to guide her, but it's her life, support her in getting the best opinions, and the best professional consultations available. You are most welcome here, and we will be happy to provide you with reasonable support and encouragement while you support your mom in her care.

Best wishes to your mom and you.

Bev

Sorry, my story may be a bit confusing. I am not a physician. When she started to feel unwell, she consulted her therapist, and for around 3 months she was tested for different diseases, like typhus, malaria, helminths, etc. Because she refused to have colonoscopy. Apart from what her therapist said to do, I consulted other therapists, and one of them recommended testing tumour markers, even though I know this is definitely not the right way to diagnose.
You see, we are in Russia. This information is not relevant for treatment, but it explains the way health care is organized here. For example, after her colonoscopy on November 21, which clearly said it was a malign tumour - due to size and appearance, she was issued a "ticket" to visit the oncologist on December 18 only - there is only one oncology clinic, a governmental one, but the demand is high. But I found a clinic in the city next to ours, where they accepted her for payment (not under her insurance). Otherwise she would have had her surgery somewhere in March, probably.
My mom is mentally competent, but before surgery she consulted a psychotherapist and was diagnosed with a mixed anxiety and neurotic syndrom. And to add one more thing - her mom (my grandmother) had rectal cancer, and after she learnt about it, she became demented, and it ended really bad for her. So I am giving her information very carefully, one step at a time, and right now she is not willing to discuss her sickness and treatment much, unfortunately.
Sorry for all this probably irrelevant information. I found this forum most competent compared to our local forums. And I see that at least we can get the same type of treatment here in Russia, which is great. Otherwise our health care is not so well organized and developed like in US.

Thank you for good wishes! My heart goes out to everyone here.

[rogerhansen]

I too recently was diagnosed with stage 2b or t4n0m0 tumor. My tumor was the size of a softball, but luckily it didn't spread to anything. They tested 29 of my lymph nodes all came back negative. I have done 5 treatments of xeloda they are also giving me oxaliplatin with the xeloda the oxaliplatin is affecting me and the roughest on me. The xeloda hasn't been too bad. I have still been able ton l work with both drugs. The xeloda honestly has only affected me in 3 ways. 1. While taking it i feel sick to the stomach and i don't want to eat much. Its not overwhelmingly sick, I am still able to play with my little boys and live life, with a little discomfort. 2. It gives me diarrhea really bad so make sure to get your dr. To tell you how to best manage that. And 3. It makes the inside of my hands and the bottom of my feet red and sore. Again none of this keeps me from living life, its just discomfort. Good luck with everything, I hope the best for her. If you have more questions please ask.

[daisydaisy]

I too recently was diagnosed with stage 2b or t4n0m0 tumor. My tumor was the size of a softball, but luckily it didn't spread to anything. They tested 29 of my lymph nodes all came back negative. I have done 5 treatments of xeloda they are also giving me oxaliplatin with the xeloda the oxaliplatin is affecting me and the roughest on me. The xeloda hasn't been too bad. I have still been able ton l work with both drugs. The xeloda honestly has only affected me in 3 ways. 1. While taking it i feel sick to the stomach and i don't want to eat much. Its not overwhelmingly sick, I am still able to play with my little boys and live life, with a little discomfort. 2. It gives me diarrhea really bad so make sure to get your dr. To tell you how to best manage that. And 3. It makes the inside of my hands and the bottom of my feet red and sore. Again none of this keeps me from living life, its just discomfort. Good luck with everything, I hope the best for her. If you have more questions please ask.

Thank you for your feedback, dear Rogerhansen! It's good to know that at least Xeloda isn't really bad. The chemotherapist mentioned oxaliplatin and its side effects, too, and suggested only Xeloda. For feeling sick to the stomach he suggested Zofran, Ondansetron, Metoclopromide - the last one really helped after surgery, when she felt like vomiting every day, so the nurse gave her injections of Metoclopromide every day. Do you know how they monitor effectiveness of chemotherapy? Our doctor suggested to test CEA and CA19-9 before starting Xeloda, and then again after two treatments.

[Val*pal]

Daisy: Stage II is a good prognosis! Others on this board can give you more informed opinions on treatment for your mom; however, I want to address your need to intervene for your mom.

My mom, who died at age 89, was someone who also was a depressive, "neurotic" etc. I spent most of my life trying to ease her life so that she would feel better. It took a huge emotional toll on me until I received some psychotherapy myself and was able to see things more clearly. Your mom is probably far stronger than you give her credit for and if she isn't, that is something out of your hands.

At the end of my mom's life, my sister and I did make many medical decisions for her since she was in and out of consciousness. Since my sister is a geriatric nurse and we also had hospice services involved, I felt good about those decisions. However, while my mom was competent, I felt she had to make the choices.

Even if your mom is someone who you need to shelter, you need to let her make these important medical decisions. It's her life, and you do not want to live with the burden of having solely made a poor decision on your own. I allowed my mom to make decisions about her health care for many years. For example, she decided against a surgery to repair her esophagus, and though I encouraged her to go ahead with it, she chose not to. I respected her decision. Later, her esophageal problems led to many swallowing complications that impacted her ability to eat, and was one factor leading to her death (aspiration pneumonia) etc. I never felt I should have "forced" her since it was her life, not mine. Also, her eye doctor wanted to do a specialized surgery on one of her retinas, and she declined to do this one as well. The doctor was very angry and blamed me, but I told him that my mom was competent and made the choice. He made me feel horrible. Before leaving, the nurse took me aside and told me that the operations are only successful 40% of the time and she would have made the same decision as my mom.

I know how protective you feel towards your mom because I was the same way. But it's not a healthy mental health situation. Your mom has needed you to be protective, but the cost on you can be costly. Please keep that in mind. In the end, we are each responsible for ourselves and sometimes even our parents need to learn that lesson.

Welcome to the club no one in her right mind wants to join. You will receive a lot of great insight and advice here.

Best wishes for you and your mom.

[daisydaisy]

Dear Val*Pal, thank you for your support. I am trying to keep her informed step by step. At first when she started to feel unwell, she said she was not going to do any testing, it would just go away by itself, and whatever it was she'd rather lie down and die, but no treatment, etc. Then my younger sister cried, and seeing her tears, she at least agreed to go to colonoscopy, she dreaded more the preparation stage than the procedure itself - she finds it very hard to swallow litres of prep solution. Then I was running around to find a place in any hospital to cut the tumour out - the oncology clinic is full, sometimes they put a bed in the corridor even. So she was accepted in the coloproctology department, where they also do such surgeries. And the time after surgery was very tough, she developed pseudomembranous colitis and had diarrhea 24 times a day, and it was dark red, green, and all kind of colours, plus nausea. And she was like - I want to die or jump out of the window (and it was the ninth floor! lucky we were). Now her suture is not doing well, waiting for the surgeon right now.

Indeed, when I think of it, all these are minor problems, but I was really knocked down with all this. I am not complaining really about our health care system here in Russia, we get a lot of things free here, but when it comes to something serious, it becomes horrible. The oncologist would hardly spend 3-5 minutes with you, not answering your questions, because there are dozens of other patients waiting at the door. And it is very common not to tell a patient that he or she has cancer. They never mention such words as "cancer", "malign", etc. in the papers. They put "C-r" - exactly like this, and not many people, especially elderly ones, will understand. And by the way, most people who are older than 50 are not even familiar with Internet to go and search for information about their disease. So mostly it's us, children, who run around and search for bits of information.

Thanks once again for finding time to reply, I really-really appreciate it. I am sure all of you here are in good hands of knowledgeable and experienced doctors, because I believe the US is ahead of the entire world in treating cancer.

[Val*pal]

Daisy,
I see what you are saying. It sounds like a very chaotic situation for your mom and the rest of you. I'm very sorry that you have to go through this at a time when your mom is ill and does not need to be concerned about how her medical treatment will be organized.

Obviously, the U.S. medical system is not perfect, but generally medical care is very good. My husband is fortunate to have very good health insurance from the job he held for 34 years. We do have out of pocket deductibles, but nothing compared to the actual costs of his care. My husband is being treated at the University of Michigan Cancer Center where we feel he is receiving quality care. What we like about it is that it is also a research hospital, so his doctors are always aware of new treatments and studies. However, I still make sure that I am with him for all of his appointments with the oncologist since two sets of ears are better than one - and I can monitor what is going on in addition to my husband.

Please keep in mind that a Stage II diagnosis is very hopeful. It sounds like you are a great advocate for your mom and will be there to help her get the treatments that she needs.

What part of Russia are you from? All of my grandparents were from Lithuania.

Val

[daisydaisy]

Val*pal,

I am from central Russia, it is about 400 km to the south from Moscow. Lithuania used to be a former USSR republic, I've heard its capital - Vilnius - is a beatiful place. If I am not mistaken, Lithuania is within European Union and NATO, so probably you will not even need a visa to visit it

When I saw the chemotherapist after my mom was out of hospital (he is the head of the chemotherapy department, quite famous at the level of Russia even), he recommended to read information on cancer.gov website, which is American, I think. And he has like a reference book, where chemotherapy is described for different stages, which is also American, I believe, because he mentioned Mayo clinic. At least Xeloda is available here, even though expensive, but later on we may get it free, after registration as a cancer patient and all the papers etc. Because we'll need 8 packs of it for 6 months.

Thank you for your kind words! They really help to get through this whole thing!

[Val*pal]

I have sent you a private message.