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I opted out of the clinical trial

VickiReed's picture
VickiReed
Posts: 66
Joined: Dec 2010

I opted out of the clinical trial last week. After two cycles of the Doxil, Avastin and Torisel they did a CT scan.
One cycle consists of:
Day 1 - Doxil, Avastin and Torisel
Day 8- Torisel
Day 15-Torisel

The scan showed some shrinkage in the tumors, not alot. Between the blood work and CT scan it did show:

Damage to the liver
High Cholesterol (over 110 points in 6 weeks !!!)
High Bloodpressure

I have had a boatload of side effects from it all.
Headaches
Sinus issues (bloody mucas)
Mouth issues (not real bad)
Sore throat
Rash at bra line and under arms
Hand and foot syndrome (hands are super tender due to blisters)

That's just a partial list. Thankfully through it all I still feel pretty good. I told my husband I would take two more cycles and that was it expecially because of the cholesterol. With all this weighing on my mind, I decided to called Dr Bevers a tell him I would be coming back soon. It was sooner than expected. I kept having problems getting my appts so they would somewhat fit my life since I have to go every week and it's a three hour drive one way to Houston. The research nurse (program coordinator) got kind of nasty to me and I felt like God was pushing me to
get out of this program, I told them I was going to opt out and the she got even nastier. I know right then I did the right thing in leaving!! I couldn't believe it. I felt like writing back to her and telling her, you won. I will die and you can laugh. How rude to treat a terminally ill patient that way. Dr Bevers was one of the most compassionate people I have ever met , not to mention an awesome doctor and I can't go back there soon enough! (his whole staff is awesome!) It will depend on how my hands are holding up if I can still keep taking the Doxil. I am hoping I can! I am also hoping to see a bit more shrinkage in the tumors. My next infusion will be July 28th after going on vacation with my whole family. I live about 1500 miles from them and we have been planning this vacation since last February. Yah!!
XXXX
Vicki

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

I think you did the right thing! sounds awful!
Cheryl

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Vickie: Sorry that the clinical trial was so brutal on you! I think your liver will recover but your heart might not. If I were you, I would ask for an echocardiogram to see if you have any heart damage from the Doxil. Co-Q 10 can help regenerate the heart muscle.

I would consider trying the the Torisel & Avastin combination if your regular oncologist is willing to go there. The people who got the best results from Avastin DID have high blood pressure from it, too. The blood pressure can be managed with medication.

Torisel is known for causing high cholesterol AND high sugar. Were you warned about that at all?

The whole stress of the clinical trial kind of worked against it, huh?

LQ

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

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's picture
VickiReed
Posts: 66
Joined: Dec 2010

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

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

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

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

What best strikes me, Vicky, is that you have such a good doctor in Dr Bevers. You desceibe his compassion and wisdom. I find such support more important than anything (though to be fair, I haven't experienced the 'atomic bomb' of side-effects that you have).

Take very good care. I will continue to think of you :)

AussieMaddie
xxxx

Carolyn68
Posts: 39
Joined: Aug 2011

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...

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

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

imerwrittah
Posts: 2
Joined: Aug 2011

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

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