Clovis symptoms ? - 1266220

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opekoe
Clovis symptoms ? - 1266220

I started Clovis CO-1686 about 3.5 weeks ago and now that I have the morphine out of my system, I can tell that the current discomforts I'm experiencing are definitely Clovis related:
body aches (NO MORPHINE - I hate that stuff!!!)
night sweats and hot flashes (I'm almost 46 - menopause maybe?)
off and on acid stomach (limited in what I can take - ideas?)
nausea (but not as bad since I've been reduced to 1000mg/day from 1250/day - but the anti-nausea drugs make me feel worse)
shortness of breath with minimal exertion (walking the kids to school and talking at the same time)
insomnia (I NEED SLEEP! I'm like a baby, if I'm cranky it's because I'm tired or hungry - pretty simple)

I managed 28 months of Tarceva incredibly well with acupuncture and am continuing to see how she can help with the hot flashes and night sweats. I've been told I respond very well to it and after a session yesterday to help with sleep I did have a better night's rest than I've had in ages. But acupuncture can only help so far. This Clovis is strong!

The good news is that the pain I had over the summer was dramatically reduced within a week of starting 1250mg/day of Clovis. My body loves these designer cancer drugs! The body aches are not cancer, they're muscle aches all over in my legs, back, hands, etc.

I don't want to be a complainer, and my husband says I got spoiled with the Tarceva (and I did!!), but these aches and this fatigue and shortness of breath really cuts into my ability to be there for my children.

Obviously this isn't a place to get personalized medical advice. However, generically speaking, does anyone have any tricks or ideas that have helped them or their patients, I'd love some additional ideas. I really seem to be sensitive to drugs that mess with your brain. I'm a happy, outgoing, fiercely positive woman with a lot to live for and an incredible support system and I'm married to the Husband of the Year.

Dr West
I don't know when you

I don't know when you discontinued the morphine, but if it was recently, it could be that you're suffering from opiate withdrawal -- many of the symptoms you describe are classic for it. That said, they're all non-specific, which means that they could be from a new cancer drug or many other things as well. Otherwise, it sounds like you're responding well to the CO-1686 in terms of the marked drop in cancer pain within a week, which makes me suspect that shortness of breath is less likely to be disease-related. Could it be from CO-1686? Perhaps, but that hasn't really been described before.

Otherwise, I would strongly urge you to discuss your symptoms with your doctor, because you must be getting CO-1686 on a clinical trial, and they need to keep close track of your side effects and symptoms.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

opekoe
Update & New Issues: First -

Update & New Issues: First - Thank You Dr. West...!

Since my above post, my dose has been reduced to 1,000 from 1,250. For the most part quality of life has been ok, but many side effects continue (nausea, diarrhea, weight loss, etc). Good news is that my recent 6-week scan shows significant reduction in cancer - most of he pain is also gone!

Ok - the new problem and I would love some feedback: As of 4 days ago the Clovis Trial people have put my medication on hold due to a high QTc level. My QTC level on EKGs have been running in mid 400 range, but my last EKG showed results of 429, 490 & 425 (3 runs). The Clovis people claimed the level was too high (over 500) and I am now waiting to see what we do next. My doctor's hands seem to be tied by the Clovis trial protocol. I am confused as to why this is calculated as over 500 ??? Also not sure why the Clovis people have not responded after several days ???

My worry is that the drug may now be ineffective (even if it gets started again) and if they reduce my dose, will my great results be maintained... We are also concerned about a flare up. Does this all sound reasonable and is there anything that I am missing that I should be considering? Thanks again for everyone's great feedback and support...!

-- Opekoe

Dr West
I'm afraid that you and your

I'm afraid that you and your doctor are really completely beholden to the trial for access to the drug. The calculated QTc is based on a calculation of a variant of the reported number you saw, so presumably one or more of these numbers crossed a threshold of 500 milliseconds. Obviously, nobody here can offer an explanation for the delay in the back and forth with the company.

We don't have data with this agent on potential flare and dose reductions, but I don't think it's helpful to presume the worst when that hasn't been shown to be the case, especially when there is nothing that you can do to change the situation.

Hang in there.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Dr West
I'm afraid that you and your

I'm afraid that you and your doctor are beholden to the trial for access to the drug -that's just the way it is with clinical trials. The calculated QTc is based on a calculation of a variant of the reported number you saw, so presumably one or more of these numbers crossed a threshold of 500 milliseconds. Obviously, nobody here can offer an explanation for the delay in the back and forth with the company.

We don't have data with this agent on potential flare and dose reductions, but I don't think it's helpful to presume the worst when that hasn't been shown to be the case. Thus far, many patients have done well with a wide range of doses of CO-1686 or AZD9291. Also, though it's easier said than done, there's no point in brooding if the plan is fixed by the protocol and out of your control.

Hang in there.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

opekoe
Dude - do you EVER SLEEP?

Dude - do you EVER SLEEP? Thank goodness you live in Seattle with all of those fabulous coffee houses!!
Thank you for the quick response.
I call from my clinical trial nurse yesterday afternoon said that I'll most likely be dropped down a dose (again) to 750mg/day and hopefully we'll hear back today (Wed.) that I can resume taking my medications.
I mentioned the flare since the pain has come back and I've had to take a 15mg morphine to control it. I'm being VERY careful since I'm very anti-morphine as a rule.
Thank you so much. My very anxious husband thanks you even more!
If we're ever in Seattle we owe you a coffee!
Maria

cathyl
so how are you doing?

so how are you doing? tolerating the clovis trial? symptoms?

Cathy Lysne

opekoe
Great timing on this question

Great timing on this question.
I had one of my three week check up appointments this morning and got some great news. Since I started the Clovis in August there has been a 60% reduction in the cancer. It has shrunk even since my last CT scan three weeks ago.
I am still on 750 mg per day and in managing the side effects pretty well. I have to make sure that I manage the diarrhea and remember to eat since there is definite appetite suppression. I have not weighed this little since I was in college – unfortunately, the body doesn't look exactly the same as it did 26 years ago. I blame the children. My EKG numbers are staying in the 450s/460s which is good.
I get lots of questionnaires asking about rashes and such, but I really haven't had the same problems with rashes that I did with the Tarceva. I am prone to eczema and tiny bump rashes anyway, so it's hard to tell what is Clovis and what is what my body would have done normally.
A bone scan last summer (July 2014) showed that some of the pain I was experiencing was probably due to one of three lesions that showed up on my spine. Within a few weeks of starting the Clovis, the pain that we theorized was triggered by one of the lesions near a nerve, subsided. A bone scan I had just before Christmas (December 2014) showed that those three lesions had either shrunk, remain stable, or disappeared. The reason why I had another bone scan in December was because I was experiencing some discomfort on my right side, the opposite side of where most of the cancer has been. That bone scan showed a new lesion in one of the ribs. But, the discomfort has been minimal and it is likely that that lesion was there last summer and is only now being manifested.
Either way, I get to stay on my current dose of Clovis. I don't have to stop it and do radiation or anything. The cancer is continuing to shrink and I am able to manage the side effects very well.
It was nice to do a little happy dance at the cancer center today!

catdander
YAY!

YAY!

It's so good to see such great news!

Congratulations!

Janine

cathyl
Great news!

Great news!
I have more questions for you.
Did your fatigue and shortness of breathe
Get better? Also what was deciding factor to reduce your dose?
Thanks for your response and great news.

Cathy Lysne

Dr West
That is terrific news!

That is terrific news! Wonderful to hear.

Please keep us posted over time.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

mewe
Do you have an update? My

Do you have an update? My husband started co-1686 at the end of December and just had his dose reduced to 650 mg. I was hoping to give him some more hope that just because the dose was reduced, it doesn't mean it won't work.

opekoe
Sorry for dropping out of

Sorry for dropping out of sight – but it's been for a good reason. I'm doing incredibly well and have been very busy with life! Girl Scouts, church, taking care of elderly parents, lunch with girlfriends, all the things that we're supposed to be doing when cancer is not number one on your stress list.

As of two days ago, March 10, I've had great news. The bone scan showed that any metastatic disease that was there is continuing to shrink. And the CT scan showed that the few lesions they've been watching are also continuing to shrink. I was told that the cancer has shrunk 68% since August which is more than anyone else they have in the study! I don't know if that's national, but it's at least for the study we have going here in Orlando. I feel like a rockstar!

As far as side effects go, I'm able to manage them well. I still have occasional diarrhea and nausea days, which appear to be connected. But, I find that if I stop the diarrhea with proper food like rice and breads, my appetite will come back. It's hard because I tend to crave vegetables primarily. But, I need to keep that starchy stuff in there to keep the diarrhea down and keep my appetite up.

Leg cramps are primarily the most challenging pain I have to deal with. I get them not just in my feet and legs but also in my hands and occasionally in my neck and even my tongue! I talk so much my friends probably don't mind when I get a Charlie horse in my tongue – it keeps me quiet for a few minutes. My doctor says they haven't come up with anything to work on that, but my acupuncturist gave me an oil spray with magnesium minute that I sprayed on my leg when I had a particularly bad Charlie horse last night. I think between the magnesium spray and the massage it limited the cramp to only about three minutes instead of the 5 to 8 minutes I sometimes get for a cramp. It doesn't sound like much, but when you're in the middle of a horribly painful cramps, 5 to 8 minutes is an excruciatingly long time.

JimC
Hi opekoe,

Hi opekoe,

Although I'm sorry to hear about the leg pain, otherwise that's a terrific update, and thanks for sharing it! Continued success to you!

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
That's great news opekoe! It

That's great news opekoe! It's so good to hear your good news! Yes, I'm exclamating in my head writing this thus the !! :)

I'm sorry about the cramps you're having. I've had intense cramps before just here and there and can imagine how tough it is. Not at all a small thing. I'm sure you know about hot baths and epsom or other salts along with the magnesium. Not a fix though when you're busy living life :) though. tiger balm is another small fix. I'm sure you know these things.

Again, so good to hear you rockstar status!!!
Janine

Dr West
Sorry to hear about the

Sorry to hear about the cramps, a rather common side effect on several of these TKIs. But it's wonderful that you're doing so well in the big picture.

Good luck with your ongoing benefit.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

cathyl
I too have the feet and leg

I too have the feet and leg cramps, but lately very fatiqued, which makes it hard to even take a walk, Im on 625mg twice a day and can't get the dose reduced, how were you able to reduce the dosage? Did that help with the side effects?
Your good news is very inspirational.
thanks

Cathy Lysne

opekoe
Sorry it's taken so long to

Sorry it's taken so long to reply. I'm a mother to two elementary aged girls who are involved in dance, acting, Girl Scouts (I'm leader), church stuff, etc.
I figure that cancer only takes up a small percentage of my physical body, so I'll only allow it to take up a small percentage of my daily life. The time it takes to swallow my pills is about it. I do make allowances for the tri-weekly EKGs, bloodworm and the scheduled CT scans. But I make sure that cancer is not high on the daily to do list.

As far as dosage, I started at the highest dose in August but I got really sick so my doctor talked to the trial administrators and was lowered to around 1000mg/day. But then the next EKG showed a high QTc so I was lowered again. I've been able to manage a dose of 375mg twice a day. My doctor and his amazing trial nurse did all the communicating with the study doctors.

I'm now in cycle 12 and have another CT scan scheduled before cycle 13.
The fatigue isn't as bad. Then again, I'm a busy mother and have a habit of not acknowledging fatigue in the first place. They mothers are like Navy Seals. But I have noticed that I'm not as tired as I was a few months ago, so hopefully your fatigue will get better.

The muscle cramps are worst in the legs and feet, but I also get spasms/charley horses in my hands, thighs, sides/rib area, and eyelids. I have a prescription for Flexeril (a muscle relaxer) but the 5mg dose leaves me hungover for 24 hours at least. I'm told I can try a half dose, but I'd rather pace the floor for 10 minutes at 4am to work out a cramp than to be in a fog that whole next day. There's not enough caffeine!

One bit of advice that I was given that Clovis folks should NOT take is to drink tonic water with quinine. Even though tonic water doesn't have a medicinal amount of quinine (which was once prescribed for muscle cramps) it can elevate QTc readings. So my doctor told me to cut back on the gin and tonics. Darn.

More in next post...

opekoe
Other advice i've been given

Other advice i've been given to help with leg cramps:

Magnesium - You can get a packet of magnesium powder called Calm from places like Whole Foods. It's supposed to help relax muscles and get you to sleep. I tried it but one of the side effects is diarrhea and I couldn't handle it. It was awful for me. But it might work for someone else.

Potassium - I'm avoiding the supplements route since I take so many pills anyway (Clovis and Calcium). This has just been suggested to me so I can't speak to it's effectiveness.

My bloodwork is showing normal levels of both magnesium and potassium so my doctor has said that it's just the Clovis's fault and that the study doctors are aware of this side effect and are hoping to find a solution.

I'm trying to see if I can get a prescription to a lovely massage and mud bath spa in Arizona or something. I'll let you know if it works...

Maria

catdander
Hi Maria,

Hi Maria,

I wanted to let you know that your post doesn't go unread even if there aren't responses. You sound like an incredibly driven person and your teens are so so lucky, I'm sure they know that.

Thank you for the wonderful description of life with cancer, on treatment, and living life with your family. We all can take from it.

Keep us posted and above all let us know if we can help.

Janine

cathyl
Thanks for the update, I too

Thanks for the update, I too have similar symptoms except developed pneumonitis which now is being controlled with prednisone. I'm hoping I can continue the trial because it reduced the cancer by 50%.
Has anyone had the pneumonitis?
Thanks for the update, Knowledge is Power!

Cathy Lysne