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My birthday is in September also! When I was on chemo I was on Gemzar and Xeloda. When I was diagnosed in Oct 07 I was told I may not make it until my daughters High School graduation in May 08. Well I was there, ended up getting a resection the next week after being told I was inoperable, and will bring her home from college tomorrow after she finished her first year! Let’s keep proving these docs wrong. Sending good thoughts and prayers your way.
Jamiesaracita wrote:Jamie D,
Could you give us information about where you have been treated? It sounds like you have received excellent care! I am very encouraged by your story, as I’m sure many other are. Thanks for posting about your experiences!
I go to the Mayo in Minnesota. I have been pretty happy with them although I did change Oncologists after a couple of months there and had a different surgeon when I had my resection in June. The previous October I had an open and close surgery and was not very happy with that surgeon. I think that it is important that you have a good relationship with your doctor and you feel they are doing everything they can for you. I believe that we have to be our own advocates at times, especially with cc. I did not find that they addressed the importance of nutrition or boosting my immune system at all. I think that this site is a wealth of information for us. If there is anything else I can do for you or that you’d like to know just let me know.
Welcome to our group. I was diagnosed in Oct 07 with Stage 4 inoperable cc. I started Gemzar/Xeloda in Nov and had 7 months of it. 3 weeks on 1 week off. At that point my main problem was my white cell count kept going lower and wasn’t coming back up. I ended up having a resection in June 08 so I went off chemo. The tumor had shrunk from 15cm to less than 5 and lymph nodes didnt light up on PET scan. Tried doing more chemo after surgery but wasnt able to tolerate it because of blood counts again and Dr didnt think it was useful. My understanding is that if I need to go back on again they can adjust the chemo to a lower level to see if I could tolerate it. So I think that as long as your husband is doing OK on it they can continue and if he has problems they can adjust dosage as needed. Hopefully he gets great results when he gets his scan in May. One thing I think is important is to try and keep his nutrition and immune system working as well as possible. I think that helped me tolerate the chemo better. I gained back the 20lbs I had lost before I was diagnosed while I was on the chemo. Keep us updated and I’ll pray for good results next month.
JamieApril 24, 2009 at 4:01 pm in reply to: Charlie Pfaff is victorious over pain and suffering in Heaven #28349
I am so sorry to hear about your much loved Charlie’s passing. You and your family are in my prayers. God Bless,
I am so sorry to hear of your most recent challenges. I have gotten alot out of reading your posts and have appreciated your wisdom and insight. I am a newer member but was diagnosed in Oct 07. My accupuncturist suggested Ginger when I needed a stool softener. Usually I have the opposite problem but there have been a couple of times I needed it. I drank ginger tea (it seemed to help) and I got some cystallized ginger I could eat but havent needed it since I bought it. Maybe it’s worth a try. I’ll keep you and your family in my thoughts and prayers.
I would also suggest you seek another opinion. Find someone you are comfortable with and that you feel is working with you to fight this.After I was told I had a tumor that was almost 15cm in my liver and there was colon and lymph node involvement I had to wait almost 3 weeks for the pathology report to finally come back before they would do anything. During that time my family had me take some alternative supplements (milk thistle, green juices, Genesis juice). Waiting can be very difficult. I will keep you and your husband in my prayers.
I am so sorry to hear about your Mom. I used coconut milk, rice milk or almond milk instead of the ensure. I was told it was easier to digest than dairy products. We added some whey protein powder and fruits to taste, ie: strawberry, blueberry, banana. Put in blender with ice if I used fresh fruit – without if using frozen fruit. I would try different combos to see what she likes and tolerates. Maybe a couple of bites of pudding would stay down. I hope this helps. Let me know if there is anything else I can do. Your Mom and your family will be in my prayers.
My deepest sympathy on the passing of your Mother. I am glad that her passing was peaceful. You and your family will be in my prayers.
My thoughts and prayers will include Sara and Seth during this challenging time.
I am new to this site but am praying for you and your family. I sat with my Mom when she passed away 10 years ago (not from cc). The last thing I did was recite the Lords prayer and tell her it was OK to go. She took her last breath and was gone. I am crying as I type, remembering… As a Mom myself and having CC I know how I would feel having my children there with me when the Lord calls me home. I believe she knows you are with her and that it means the world to her. She is blessed to have such a loving daughter. May God Bless your entire family as you go through this most difficult time. My prayers are with you,
JamieKristin wrote:I’ll believe it when I see it, that’s all I have to say…
My husband and I are among the unlucky 7% that have to buy their own insurance. We’re just fortunate to live in a state that won’t let insurance companies drop you if you get sick.
My husband and I are in the same group as you. We have to buy our own individual policy. In the 18 months since I first went to the doctor I have had over 30K in out of pocket expenses not including the monthly premium. We just got informed they are raising out out of pocket and the monthly premium. My husband found out that we have no options because we cant change policies. If we change they can cancel our policy. I feel that they are just waiting for us to be late with a payment so they can cancel us. At times I worry what I am doing to my family financially. But I also worry that if we go to some sort of mandatory insurance that it will be rationed and those of us with cc will be deemed not worth the cost of treatment because of poor prognosis/statistics and may be denied some/any treatments.
Jamiedevoncat wrote:Thanks everyone. I am feeling better today. I am continueing to take milk thistle. I have not let anything pass my lips that doesnt qualify as “healthy” or “helpful” for the liver. I have even cut the milk out of my tea…oohh the sacrifices I must make! Surely that is a fate worse than death?
I am still feeling physically great. The weather has started to get better so hopefully I will be out on my bike soon. My sister arrives on Wednesday for two weeks of girl time. We might go on a late deal somewhere and just sit in the sun…depending on my chemo. Will find out more on Thursday.
I use rice milk or almond milk. I’ve been told it is OK to use and a healthier alternative to regular dairy. Enjoy your girl time and I’ll keep you in my prayers. Good luck on Thursday and keep us posted on how you are doing.
My prayers will be with you that tomorrow brings good news from the scan and that the chemo goes well for Fiona.
I’m new to this board and wanted to offer my support and prayers for you during this time. I love the outlook of your Doctor. How refreshing!! Now for those darn liver function tests, we need to get your liver up and running like a beautiful, sleek race horse. ( I know the expression is supposed to be a well oiled machine but I love horses!) I don’t know what you are taking or on for supplements but let me share with you what I tried and am still on.
1) 20 milk thistle seeds chewed daily
2) Genesis liquid 4 ounce daily
3) Essiac tea with echinacea and cleavers 1 ounce at bedtime
I also use accupuncture. I dont understand it at all but I know it helped with pain/nausea at first and I know she does points for toning different systems that are weak or stressed. I still go every 2-3 weeks depending on how I’m doing and what she recommends.
I am on other supplements as well for additional immune boost, GI support and general nutrition. The first 3 supplements I mentioned I’ve been on since early on, milk thistle in capsule form and the Genesis I started as soon as I was told I had a problem with my liver. The Essiac with additives I started within a month of diagnosis when I started accupuncture. My liver function studies were 5X normal when I started. My accupuncturist told me to be careful when my levels were so high, that I needed to decrease the stress on my liver. At that time I couldnt sleep without a sleeping pill but she said that the sleeping pill I was on wasn’t as bad as others and that it was important to get rest too. Maybe there is another alternative for your antidepresant? If you are feeling good enough to get a little exercise that may be enough to boost your serotonin levels and I agree with Marion that sunshine may help. This may sound silly, but I bounced on a mini-trampoline. I was told it would help my lymph system I think she said the jogging/bouncing would help it drain/flow. I wanted to know what I could do for my lymph system because I had so much “activity” in it at first and when I was going for the Pet scan before they would agree to surgery I knew if it was still there I would be ruled out, so I tried everything. I didnt feel that great and was fairly tired but I tried to bounce a little at least a couple of times a day. The cleavers also helps with the lymph system. By the way, my bilirubin was always normal also, it was just the liver function levels that were bad. I dont know if any of this helps but it’s what I did and I’m still doing. You will be in my thoughts and prayers. Please let me know if there is anything I can do to help.
Thank you all for your kind words and warm welcome. If we have to go through these trials and tribulations I’m grateful we have each other for support.