This is long but need suggestions Please!
My mother in law, age 62, was diagnosed w/ stage IV adenocarcinoma EC that has metastisized to liver, lesion on a lung, L2 in lumbar, lymph nodes. She gradually started having difficulty swallowing starting in June of this year but she said it didn't concern her because her dad and a sister have a condition that causes spasms and they will have problems swallowing. Starting in August she was feeling worse, losing weight and by early Sept she began to develop pain to the right upper side of her abdomen that would last up to a week after eating meat and then was concerned enough to see her primary doctor. He ran blood work on her which showed her liver enzymes only slightly off and if I remember correctly everything else was fine. He referred her to a gastroenterologist for endoscopy. We live in a smaller town and we are limited on the number of specialist we have so it was her appointment was going to be a month out from all that. By the end of October she had told by husband she was feeling so bad she didn't think she would make it to that appointment and she is not one to complain about anything. The next day she was at work, and thank God she works at a hospital, she was eating pancakes for breakfast and couldn't swallow it at all and was vomiting. Her co-workers knew this had been going on and noticed her weight loss and literally grabbed her by the hand and drug her to the ER. There they did a CT scan and told her that she had cancer everywhere. She was admitted to the hospital. They did a liver biopsy and the endoscopy. She has a large tumor to her lower part of the esophagus and the doctor was able to dilate slightly to help with swallowing and did a biopsy on the tumor.
Now since we live in a smaller town and limited on specialists, they are always overbooked. As a nurse, I feel the quality of care with the specialists, the technology, and overall knowledge of advancements is just not nearly the same as in larger cities. We are only 2 hour drive to Houston, TX which has some of the best medical care known. But since she works at a local hospital and the insurance, she wanted to see what 1 of the 2 oncologists here had to offer.
On 11/1, my husband, brother in law, and myself went with her to meet with the oncologist here in town. Her appointment was at 3. Other patients in the waiting room were saying that the wait is always so long to get called back that you better pack a lunch/snack and something to occupy your time. Sure enough she was called to the back close to 5pm. When the doctor came to the room, it appeared that he had not reviewed any files prior to the appointment and was looking at it for the first time there. He told her it was stage IV EC, talked about the metasis, and told her without treatment life expectancy is average 6months and with treatment averge is 1 year. He then brings up a website with the latest treatment recommendations, goes through a flow chart of what her symptoms are to come down to what kind of treatment options there are. He said he recommends starting an oxalplatin and went over how often treatment is, side effects and why he chooses that over a cisplatin. At this time there were not results on HER2, and only discussed if it was positive he would add another drug on top of the oxalplatin. Brother in law asked about natural, organic treatments she could do on her own to go with the chemo such as tumeric capsules, a turkey tail mushroom(?), etc.... The doctor said he doesn't like anything being added outside the chemo because if there is a reaction is it from the chemo or the organic stuff. Regarding nutrition, he just said let her eat whatever she wants for the calories. BIL is against all that and BIL asked about more of a green diet, less sugar, alkaline diet, etc. The dr said could but since she already had problems swallowing and then when starting chemo and not going to have an appetite, he just wants her to eat whatever she wants. All in all the 3 of us were not impressed with what was said, we took that there's no hope so just do whatever you want and we'll give you chemo to help you live slightly longer. (My husband and I know there's no cure for this stage, but we felt like most of it was horrible advice. Now BIL and his wife feel there's a cure if she does organic, holistic stuff w/ the chemo). Mother of course is scared and wants to start treatment as quickly as possible. So this doctor set up appointment for PET scan, port placement 11/10, MRI for 11/13 and to start chemo 11/14. I asked the nurse practioner in the office about having an oncology team and they do not have that. We did convince her to get a second opinion from MD Anderson in Houston.
The results from the MRI showed that it had not metastisized to the brain, but it had to liver, lesion on a lung, in L2 lumbar and lymph nodes. She had port placed and then the day she went to have her chemo treatment, the person who handles insurance in the doctor's office had quit and had not gotten preauthorization for the chemo and did not tell anyone. She sat in the waiting room for 2 hours before they told her anything.
This past Wednesday was the MD Anderson appointment. This doctor was open to natural supplements as long as not in a capsule form or liquid extracts where it would be a concentrated form but mom is scared after what the other doctor told her. MD Anderson doctor went over a better nutrition plan for her. Suggested if she wants a chocolate milkshake that it's fine but maybe trying adding protein powder to it to help get nutrition out of it, she discussed different ways to make health punched smoothies, smaller frequent meals, try to make healthier food choices when given the option but at the same time eat what she can. She said she would start with a similar treatment the other doctor suggested. But she would add taxotere for 2 months to jump start and then switch to folfox. She said more than half of her patients show no progression in cancer with this plan on the 1st scan. She suggested w/ the holidays approaching and the doctor here doing a very similar treament plan, to go ahead and start here and then after the first of the year before her 5th cycle, to go back to MD Anderson for her 1st scans. She said if things look good to cont treatment here and if not she definitely wants her to start going there and look at different options. She said in that case they could do test to see if she would qualify for clinical trials and to see if she would qualify for immunotherapy. She emphasized to mom that life expectancy varies from each person and she has patients w/ her diagnosis who over a 2 year mark, also depends on how much she wants to fight and take care of her body as well. At MD Anderson she would be set up w/ a case worker, dietician, on call staff. Everyone was very pleased with this doctor and feel more optmistic about her receiving, how we all feel, better care. But she does start her first treatment here Monday the 20th.
My husband and I went by this evening to go visit with her. She was complaining of feeling nauseated and weak all day. She said normally she can eat a little something and she'll feel better but not today. She tried peppermints, lemon drops and some kind of wrist band things to help with nausea but she said nothing worked. She said the BIL has made her smoothies and bought organic protein to add but everything he's made, she doesn't like. She looks like she's lost more weight since Wednesday. A case worker w/ her insurance called her today and told her they will not cover MD Anderson if she can have treatment here.
So now knowing the story, I'd like to get some information from people who have already experienced all this, so I can share with her for some hope, advice from people actually experiencing what she's going through she can try versus what a doctor from the outside tells her.
1. Have you or any loved ones used this same treatment plan?
A. What kind of side effects were experienced? Was there anything that helped you relieve the effects?
B. Was treatment shown effective after first scan? If not, what were the next options and what was chosen?
C. How long were treatments at a time? (she's supposed to wear a pump for 48 hours but they told her first time she would be there for over 2 hours)
2. For anyone w/ EC: How do you relieve nausea?
3. Do you or your loved one use any organic supplements? If so, what kind? How do you think it helps?
4. What works best for you or your loved one for nutrtion?
A. If a feeding tube is used, at what point was that an option? (hasn't even been discussed by either doctor)
5. What is the stance on cannibis?
6. Any other advice or suggestions you have for her that I couldn't think to ask?
Thank you in advance for taking the time to read all of this and for any advice. She's greatly loved and we want to have as many options available to help provide comfort, support and hopefully more longevity for her.
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