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Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

After I replied to a new member, yesterday, who was inquiring about alternative cancer treatments (a very popular question), I attended a support group I regularly attend. The group members are blood cancer survivors--leukemia, lymphoma, and multiple myeloma. 

Our meeting yesterday was on the subject on nutrition, facilitated by an registered oncology dietician. Conversations evolved into what foods and other things, could help (or aggravate) such conditions as gas, bloating, cramping, nausea, constipation, and other side effects of treatment. One man said he had suffered with abdominal cramps so severe that he couldn't sleep. Doctors ran tests and prescribed medications but nothing helped. A friend of his  suggested he try Beano and he was amazed by the instant relief. 

A woman who had a stem cell transplant at Duke University, said she was nauseaous the whole time she was there. Once home, a friend brought her some ginger candy from the health food store, and suddenly her nausea was gone. 

In my own case, my first neulasta shot caused extreme bone pain. My insurance case manager (an RN) suggested Claritin. I checked with my doctor, who kind of smirked, but said that was fine to take. When I reported back to him how much it helped, he was surprised. When I told him his nurses knew about it, he was even more surprised. When on R-CHOP, and facing constipation for the first and only time in my life, my doctor recommended things that did nothing but cause pain. It was my Mother who recommended old fashioned milk of magnesia, and viola.

The question at the meeting was, "Why don't doctors tell you these things?!" 

Your doctor is treating your cancer. You can't expect them to know everything. And I suppose that is my point. Don't forget to seek out help for yourself. Many major cancer centers are beginning to offer complementary care--nutrition, aromatherapy, massage, reiki, accupuncture, and other modialities to help you feel better as a person, while you receive treatment, and after. 

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3205
Joined: May 2012

R,

I am now in a lifetime Wellness-Survivorship program run by my Cancer Center/Teachng Hospital.  It requires a certain level of post-treatment N.E.D. for admission.  It offers some similiar items to what you described:  A registed dietitian, Yoga, Music Therapy, a psychologist, physcal therapy, and other items.  And, it is described as a 'quick-return' link to an oncologist if necessary (I am screened annually by an Oncology N.P.).  But, this program as I mentioned is not available during active treatments.

I tested once during chemo years ago and the oncologist said he was perscribing potassium.  I told him I had been low in potassium in the past, and he asked me "What did you do then?"  I said, "Ate bananas, and it returned to normal."  He both laughed and seemed stunned, and said, "Well, then we will try bananas for a while," and it worked again.    He is a genuis, but also a good example of the mentality you described above.

You are right: doctors simply cannot know everything, or think of everything, with every patient. 

Enjoyed your post,

max

lindary's picture
lindary
Posts: 624
Joined: Mar 2015

Reminds me of a conversation I had with one of the nurses at Rush. She had asked me if I had any problems with nausea. When I said No she then asked if I had any kids (yes-3) and if I had morning sickness (no). She then told me that her experience was that women who did not have morning sickness were less likely to have problems wiht nausea while getting chemo.  Granted I was taking the anti-nausea meds but I guess it doesn't always help some people.  Since I wasn't about stop taking those drugs I can prove she was right or wrong. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

In the beginning I was upset.  I lived a life of wellness then this.  But my Wellness wasn’t cancer provention it was and is for overall health.

When I was first diagnosis I wanted to throw it all out the window, several of my doctors explain my lifestyle maybe why I’m doing so well.  During treatment I didn’t feel well.  Terrible shortness of breath and fatigue.  I started to make smoothies and juice.  I felt better.  I did not suddenly turn into Jack Lalane or an Olympian, I just felt normal again.  That was wonderful for me.  It did not stop at food, exercise if I could, yoga, journaling, mindfulness,  aromatherapy and more.   I guess in a way it was an important distraction that focuses on the living and feeling better and not the negativity that cancer can give.   I think of it as empowerment.  

 I would rather take one step in the right direction and feel better than waste hours on my butt focusing on the negative.

Rocquie you’re right,  Oncologist certainly can have tunnel vision sometimes.  My Councelor and nutritionist were a valuable  resource to me. 

 

philr828
Posts: 17
Joined: Nov 2017

Like your dad, I have NHL STAGE 4 MANTLE CELL in my bone marrow. I am sorry you lost your dad after only a year and a half. I am on my 3rd treatment tomorrow and have 3 more left to see how I am doing with some more tests in May. Exercise is my best therapy and I am doing 30 minutes of exercise now and I feel great! My last 2 blood work results were normal and now I am looking forward to a long life. Good luck in your remission.

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

You sound like you are well on your way to a long and healthy life.  My father only did one treatment, it was too much for him. Thank you for your kind words. I miss him everyday.  2014 is a lifetime ago in the oncology world.  Things are different today and treatment for Mantel Cell is so much better.

May you have much success with all you treatment.

OO7

philr828
Posts: 17
Joined: Nov 2017

Thank you for your encouragement. I am positive I will be fine and my doctor has 40 years of exerience in hemotology and oncology and I trust him 100%

 

Evarista
Posts: 247
Joined: May 2017

A friend (a nutritionist) gave me a lovely cookbook while I was in treatment: "What To Eat During Cancer Treatment" by Jeanne Besser, et al.  It is published by the American Cancer Society. I found it very helpful during difficult times.  It is divided into sections according to symptoms (nausea, constipation, etc) and has very applealing and uncomplicated recipes.  If you are looking for something for yourself or for someone else, I recommend it.  One caveat though: it does not address the "immunosuppressed diet" that us blood cancer patients need to observe for much of our treatment, so some recipes need to be adjusted accordingly.  But there are still plenty of useful recipes and tips. Very affordable and available at Amazon.

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