Clovis symptoms ? - 1266220

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

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

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!

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.

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...

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