I opted out of the clinical trial

Opting out of clinical trial
I think you did the right thing! sounds awful!
Cheryl

Good to get out of it
Hi Vicky,

good to get out of the trial. And good to hear that you have Dr Bevers to help you as well. I'll be thinking of you and wishing for all of the symptoms to disappear now.

Take care of you,

AussieMaddie

xxx

VickiReed said:

Just started another treatment
I am back under Dr. Bevers care and went with his recommendation to take
Doxil and Avastin since the tumors were responding to treatment. He upped the amount of
Doxil but still less than a full treatment due to the condition of my hands and feet.
I am glad to have dropped the Torisel, I told him I felt like it was a wrecking ball and he
thought more like and atomic bomb effect for me. It seems you have to pick between the better of the two evils, cancer vs the poison (chemo). I am willing to withstand the side effects of the chemo and hope I continue to feel good. His next line of treatment will be Cytoxan. I hope I can handle this one for a while. I take the Doxil once a month and the Avastin every two weeks. We love Dr Bevers and the comfort, compassion and wisdom he provides. It was worth it to try the trial but surely wasn't for me. Hope you all are doing well.
XXXX
Vicki

Hey Vicki
I'm glad to hear that you are responding well to the treatments, but bummed about the side effects you have. I have been pretty lucky regarding side effects, its mostly fatigue for a few days every couple weeks. There have been some threads on the colon board about mitigating neuropathy symptoms and some folks have had luck with supplements like flax seed and the like. It might be worth a look and a conversation with your doc.

I posted a pic of my dog Ollie in my "Expressions" page of my CSN Space. Its from last year when he was 'lil. Your dog and mine share similar markings. He's since gotten bigger and developed more black spots.

All the best!

Ray

you're vacation
Have an awesome vacation with your family and leave the cancer behind for that time. Good luck to you. Hope it helps to know that strangers care about you. Lou

Carolyn68 said:

Clinical Trial
I am a 61 year old female, diagnosed with peritoneal cancer, June 2010. At that time they did a total hysterectomy. I started chemo June 2010. I am on a clinical trial. I finished my 6 month chemo in December 2010, followed by Avastin for maintenance until Oct 2011. I have had several side affects....mostly my arms/shoulders. Have seen several doctors, physical therapists and claim I have frozen shoulder. I have had several steroid shots to have relief for a short time. They tell me on the Avastin it is normal to have a horase voice, of which I do. I went to ENT to verifty I had no tumors, he said from Avastin. I have recently lost 7 lbs, unexplained, my doctor is not concerned. I try to walk and take in as much good calories as possible. MY CA 125 was 110 before surgery...then went down to 6 and now has gradually raised to 10. My onc is not concerned.
She says I am doing very well on the clinical trial. She gives me a good prognosis...but, everyday there seems to be something....I am out 14 months from diagnosis and I am scared every day of what is next! I lost my job due to my cancer....and being at home is fun, but no fun. I am limited as to what I can do because of my arms/shoulder pain. I was so much better mentally when I was going through heavy chemo then now. I just can't seem to get over this hump....I have a lovely family for support....but, this can't be our main tie each day. Any advice for a person who is scared, crys alot and afraid of dying....I am married....I feel so much better when I am around him.... I also have an excellent doctor and staff. I am seen every week for my blood work, cbc, I see my onc every 3 weeks for full blood work and CA125/and Avastin. There are 3 woman in my clinic on this trial...one lady dropped out because of severe bone pain, other lady has NO side affects and is doing beautiful..... I am glad I found this site....we can help each other...thanks for listening...

Welcome to a newcomer
I'm going to have to do all my posts in a temporary file offline first in future because this is the second time I've written a long post to someone then, after pressing Submit, have lost it completely.

...............

At 61, Carolyn, we're the same age. We were also diagnosed the same year, you in June, me in September. But I haven't gone through nearly as much as you have, or had anywhere near the side-effects you've been through. I'm so sorry that you're still going through those, including losing your job and the constant depression.

It's great you're responding so well to the trial, even if it is having such terrible side-effects. You speak of having felt much better under the original chemo, may I ask what that was? I have just finished being on carbo/taxol and I've been more lucky than most, having had almost no side-effects. I've head some others say that they have been ok on carbo/taxol but many speak of terrible nausea in particular.

With surgery as well, you've been through the works. I'm very glad that you have a good family. You didn't specifically mention children. Do you have any? If so, do you see them frequently? Do they have children of their own? I have two siblings, a sister with two daughters, both of them with babies of their own, and my brother has three sons, one of them with a baby, about six months old now, and very serene. It's always nice to see them.

With all your difficulties, it's not surprising that you should feel depressed. To feel like crying all the time suggests to me some depression but I don't know. Does the oncologist know how hard it is for you emotionally. I found only about two months ago that I was feeling depressed, in a way that I wasn't used to. I mentioned it to my oncologist, asked if it could be due to the chemo. He couldn't say. So I asked my psychiatrist if I could try an anti-depressant. Can't say if it's helping but it doesn't seem to be hurting me either. I'm very lucky that I don't get many side-effects, from medication or the chemo, but that could change in time.

As I was reading your post, I had the idea that, although you are happy being with your husband, would it also help to have things around your home to help pick you up, such as fresh flowers in your lounge &/or your bedroom each week? Another idea I had was, if such a thing would cheer you up, to call on your family to make or buy a bird's nest to hang somewhere just outside a window that you often look through, with water and bird seed, to attract birds to watch and listen to. So long as they don't do what they do to me in the backyard, soil my clothing when the washing is hanging out! I have fruit trees which they love. So if it suits you, keep the nest close to the window but away from your clothes line.

The only other idea I had was perhaps a therapist to work through issues that might need to be addressed around the matter of your grieving and the losses that are occurring to you. I once read an excellent book called " Necessary Losses: The Loves, Illusions, Dependencies, and Impossible Expectations That All of Us Have to Give Up in Order to Grow" by Judith Viorst

Another very good book I enjoyed was called " Living Creatively With Chronic Illness: Developing Skills for Transcending the Loss, Pain, and Frustration" - by Eugenie Wheeler
Paperback (1989)

Because I haven't gone through anything like you've gone through, I'm sorry if my ideas seem totally unhelpful to you. I mean well by mentioning them. In the end, it is the people whom we most love who can bring the best support, but I hope that you do feel supported here as well, and come to feel less alone with your experience when you hear of the similar experiences shared by others. I admit that my own experience has been much, much easier till this point but I know that most people here have experiences much closer to your own.

Take great care, and know that I am sending fond thoughts to you in the hope that you will get over this hump as you fought through every other stage of your healing work.

For now,

AussieMaddie