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        Cluster Headache Help and Support >> Cluster Headache Specific >> Cluster and Chemo
        
(Message started by: seasonalboomer on Jan 15^th, 2007, 11:04am)

Title: Cluster and Chemo
Post by seasonalboomer on Jan 15^th, 2007, 11:04am

I mentioned this last week as an aside but am trying to help my Dad prepare for his next appointment with his oncologist. After beginning a second round of chemotherapy and then getting some injections to help his system balance his red and white blood cells he had his CH's triggered. He had for the past 5 or 6 years been PF. He had reached that point we all dream of -- aged out of CH.... But, he's getting minor hits pretty regular for the past week.

He is getting Gemzar and Nuelasta for treatment of his pancreatic cancer.

Any of you closet pharmacologists got any thoughts as to what the trigger could be?

What I've told him already is that he needs to tell the doc to get him an O2 rig at 12-15 lpm along with a non-rebreather mask (until I can take him a Clustermasx). I don't think adding more chemicals will be very good for his situation but he could at least get the relief of the O2. I've also told him to grab a few cans of Red Bull but be prepared to watch TV for al ittle wihle if he drinks them in the middle of the night.

All ideas appreciated.

Scott

Title: Re: Cluster and Chemo
Post by starlight on Jan 17^th, 2007, 9:53am

Scott--
It's always hard to pin down what "starts" these cycles. After 5 years PF, could have just been your Dad's time to start again--as cruel a timing as that might seem considering the other health problems he is having. But as far as the chemo being a trigger, certainly, I don't see why it could not have been a trigger. Anything that throws us off balance is not good when you are a clusterhead--but I don't know if chemo specifically can trigger CH. But with chemo oftentimes people lose their appetities--skipping meals is not good for CH. Or just the chemicals themselves--who knows what action they might have? Or stress--emotional stress brought on by his cancer and his chemo? More and more I think that emotional stress may play a large role in these headaches at least for me.
I hope these headaches leave your Dad soon--O2 sounds like a great solution in
his present situation. Also I hope he does well with his chemo treatment. Star

Title: Re: Cluster and Chemo
Post by Margi on Jan 17^th, 2007, 10:14am

sorry to hear this, Scott. Makes for a double-whammy for you, I know.

I've heard of other seniors who've had remissions of 6 - 7 years and then, out of the blue they get hit again. Could be the circadian thing or just some cruel joke the universe is playing on your dad. I know we've had cancer patients doing chemo in this cluster group before and I don't recall them mentioning an increase in activity because of the cancer meds.

My heart aches for you and your family right now. Hang in there. Always here if you need a shoulder.

Title: Re: Cluster and Chemo
Post by Mattrf on Jan 17^th, 2007, 4:15pm

The beast truly has no mercy, like the cancer isn’t bad enough.
I am truly sorry he has to deal with both at the same time, I will add him to my prayers.

Matt

Title: Re: Cluster and Chemo
Post by seasonalboomer on Jan 19^th, 2007, 11:08am

doctors !@!@#$$%$%!

So, I get Mom and Dad all prepped for their meeting with their doctor. 10-15 lpm, non-rebreather, blah, blah, blah.

Doctor gladly writes him a prescription for $1,200 worth of imitrex but won't go through the trouble of trying to get him a prescription f&*%ing oxygen!!! "They won't approve paying for a flow rate at this level, blah blah blah"

At least he got the imitrex I guess but damn, the easy answer put right out there for him and no. So now he can only get 2 shots at a time (up to the 16) under his co-pay with medicare, and they will end up limiting him to a small number per month -- grrrrrrrhhhhhh!

So, I'm going to take him my rig this weekend when I go down to see him and set him up. Doctors!

Title: Re: Cluster and Chemo
Post by tanner on Jan 19^th, 2007, 3:46pm

Scott, you said when you go down to see him. Where?

O2 is no longer working for me so I have a rig and a couple tanks that are just sitting here. I can get refills.

I am south of you outside Spartanburg and would be happy to meet you anywhere thats good for you along the way.

......Tim

Title: Re: Cluster and Chemo
Post by seasonalboomer on Jan 20^th, 2007, 7:23am

Tim -- check your IM's. I fill up with emotion when stuff like this goes on on CH.com. The compassion and generosity of this community is amazing -- not too mention the love. Tim, you're a good man and I'm hoping I won't have to take you up on the offer but I will let you know by Sunday.

Best regards,

Scott

Title: Re: Cluster and Chemo
Post by seasonalboomer on Jan 23^rd, 2007, 8:09pm

So, I've been reading a little. He was given a drug called Nuelasta to boost his white blood cell counts. In the process, from what I've read, it looks like it can have the effect of putting red blood cell counts out of whack, resulting in anemia. When you're anemic, your cells aren't carrrying the oxygen load they should.

Thus, it may be the reason why, the O2 is working for him to knock back a hit but the hits are coming back. 5-10 hits a day, the last couple of days. He boosts the O2 enough to kill a hit, but then his anemic system drives things right back into hit-land.

Anyone got any feeback on that theory.

They actually make a drug for the red clood cells to be boosted -- so i've put Dad on a mission to ask the doc.

Thanks all,

Scott

Title: Re: Cluster and Chemo
Post by RichardN on Jan 24^th, 2007, 2:00am

Scott

I am (so far) a cancer/chemo survivor. Several months ago I started a thread, "Cancer, Chemo and Clusters", because my attacks reduced to the point I wasn't carrying my 02/regulator everywhere (when I started the chemo, I carried a backback with "B" tank and regulator with me everywhere . . . and an "E" tank in the van). This reduction in attacks prompted me to start the thread . . . . though no one replied with similar experience or possible reason for the reduction in attacks.

I got online tonight with the intention of starting a thread I have been putting off for a few months, but I feel this is an appropriate place to state my case . . . . . for the water therapy.

I was diagnosed with bladder cancer 5/03, after (barely) surviving a bout with meningitis in Mar of that year. Followed by a year of surgeries, treatments, culminating in cystectomy (removed bladder/prostate), late Feb 04 (amazing surgery . . . I have no stoma), however cancer was in the lymph nodes so started the chemo about six weeks later (one short session and one long session each week . . . three weeks on and one week off for three months . . . was taking Gemzitabine (sp?) and Cysplatin (sp?) and had a shot or two of Neulasta and something else I don't remember)

OK . . . back to CHs. Prior to my chemo, I stopped taking my Verapamil (blood pressure was dangerously low for me), also stopped Zocor, Zetia, Altace (my personal reasoning being I didn't really want to add more chemicals to the mix of poisons which were going to be invading my body. . . .and my attacks all seemed to be minor and easily aborted with the 02.

NOW THE CONNECTION (finally) I mentioned early my cancer was bladder cancer. It is necessary (and was from the day of the operation) that I consume large quantities of water (to keep flushed and prevent UTIs). Though I don't have a stoma, I do have to cath myself (and at home do so in a measurable beaker) so therefore I have a ready gage of how much I pass.

I am now abosolutely convinced that water therapy has helped me greatly reduce the frequency/intensity of attacks. If I pass 4-5 qts or more in a 24 hr period, my attacks are minor (Kip 2-3) come on slower and are easily killed with the 02 in minutes. If I am ill (which I have been recently) and napping/sleeping more than normal (and not slamming down the water) . . . my attacks hit harder, faster and I must get to my 02 quicker to keep him from the "dance" stage. In early fall, there were a few days of activity in which my water consumption dropped to less than half my normal intake . . . . followed by a few days of multiple bad hits (my first Kip 10 in a while) until I got my water consumption back up.

Chemo really kicks you in the butt . . . . the constant exhaustion is a real drag. . . could it be that he has reduced HIS normal intake of water . . . because of general lethargy and inactivity?

I would check with his doc to make sure there was no chance of diluting meds or somehow interfering with his treatment if you/he would consider water therapy.

Best wishes to you both,

Be Safe, PFDANs

Richard

Title: Re: Cluster and Chemo
Post by seasonalboomer on Jan 26^th, 2007, 11:09am

Just an update for everyone. Dad went to the oncologist yesterday after having a couple of pretty bad cluster days. My theory might have been right. His blood cell count showed some pretty severe anemia -- they gave him a shot of Aranesp for his red blood cells --- result ---- no clusters yesterday and good so far today.

One of the listed side effects for the other stuff he was given (Nuelasta) was that it can cause headaches. So, I'm thinking the Nuelasta was the culprit.

That's some pretty great news for him.

Richard, thanks for your feedback and follow-up. I told him to up his water intake as well at your urging. Keep strong.

Scott

Title: Re: Cluster and Chemo
Post by seasonalboomer on Feb 5^th, 2007, 10:17am

Another update. His clusters roared back after a day and a half of respite. He's getting hit from 3-6 times a day. Thank goodness the O2 seems to be getting him a majority of his relief. When he's just wore out from too many hits he then makes use of the Imitrex which works like a charm for him as well and lets him rest.

He's doing pretty well otherwise. Thanks to everyone that has checked in asking about him. Still seems to not have any other side effects from the chemo and says that if wasn't told it was so he would find it a surprise that he is as sick as they say he is. So we're crossing our fingers that this will continue for awhile.

Best regards,

Scott

Title: Re: Cluster and Chemo
Post by tanner on Feb 5^th, 2007, 11:05am

Scott, Thanks for the update and the call. Sorry I wasn't here to catch it.

As I mentioned the last time we spoke I gave your Dad's name and and story to my Mom-in-Law to be added to her prayer group. So three times a day about 20 little old ladies
(she would kill me if she heard me call them that) are doing their Rosary's and offering up prayers for many people in need including your Dad. They will also keep a candle burning.

Wishing you all the best and tell your Pop I said Hi. Tim

Title: Re: Cluster and Chemo
Post by seasonalboomer on Feb 22^nd, 2007, 1:34pm

I've been using this thread to keep those that have kept my Dad in their prayers up to date.

Great news! His latest round of chemo has had some good results, shrinking the tumor by what sounds like about 1/3.

He's still getting hit with CH pretty badly. 4-8 hits a day. O2 starting to have its limits and Imitrex even taking a little longer than it was.

From a thread last week I pulled down the Pred taper dosage info and told him to talk to his doc. Hell, what does he need to worry about increased appetite and gaining a little weight. He's starting the Pred today and I'm saying a ltitle prayer for him.

My family thanks everyone for their prayers and wishes.

Scott

Title: Re: Cluster and Chemo
Post by tanner on Feb 22^nd, 2007, 2:12pm

Thanks for the update Scott. You know we are all pulling as hard as we can and every inch ahead is a huge distance!

I just finished my Pred taper yesterday and it most definitely made life a bit easier though I did not get the complete break that I hoped for. Oh well, I am not gonna complain.

I hope the Docs give it to your Dad, as you said why not! Going from never being hungry to being hungry all the time was weird and I had forgotten about that side effect. It was kind of nice except the main thing I wanted to eat was celery with cream cheese and baby dill pickles by the jar ::). Pregnant maybe :o

Give your Dad my best please and tell him to keep kickin butt!!

.............Tim

Title: Re: Cluster and Chemo
Post by chewy on Feb 22^nd, 2007, 7:58pm

Quote:

Anything that throws us off balance is not good when you are a clusterhead-

Couldn't agree more with that statement.

The O2 sounds like a good idea for your Dad.

Stay strong. Be his best friend.

Title: Re: Cluster and Chemo
Post by Kevin_M on Feb 22^nd, 2007, 8:06pm

Quote:

So, I'm going to take him my rig this weekend when I go down to see him and set him up.

on 02/05/07 at 10:17:52, seasonalboomer wrote:

He's doing pretty well otherwise.

So we're crossing our fingers that this will continue for awhile.

You bet Scott and good job being there so well for him.

Title: Re: Cluster and Chemo
Post by seasonalboomer on Feb 23^rd, 2007, 9:15am

The prednisone seems to have given a break from the hits over the last 24 hours. Praying that it will continue.

Scott

Title: Re: Cluster and Chemo
Post by Margi on Feb 23^rd, 2007, 10:20am

praying for that here too, Scott.

Title: Re: Cluster and Chemo
Post by seasonalboomer on Feb 27^th, 2007, 3:22pm

The prednisone seems to have effectively given him a break in the cluster hits. It's been 4 days without a hit. Yet another situation where something pulled off this site triggered an idea which has been a godsend to somebody. Thank you all!

Scott

Title: Re: Cluster and Chemo
Post by seasonalboomer on Mar 3^rd, 2007, 5:24am

It’s been so long since I’ve had a cycle that was this brutal. Last night saw me work through 6 hits between 6:30 pm and 4:30 am. Having already used several Imitrex this cycle and fearing that it may be contributing to the overall severity of the cycle I wanted to go through a whole night without it. So, to the tank, to the tank, to the tank I went. Almost a whole E-Tank in one night between all the hits.

Thank God it is working because I seemingly can’t even think of withstanding a hit full on anymore.

I’ve worked so hard to try and manage and minimize my CH. And for the past several years had felt as though the efforts of trying to push through my cycle by staying in intensely high levels of physical condition, living life not only out of cycle but while in cycle, was working.

It began on January 6th, and from all indications it looked as though it would be a light cycle. It even seemed to start with a stray hit and then not come to fruition. And the next several weeks were occasionally marked by a hit now and then from running. We’d had weird weather, so I chalked it up to bad whatever.

Then a three weeks ago things seemed to take a turn and I got a multiple hit night and finally relented with the Imitrex when I knew I couldn’t afford to go without the sleep with what I had going on the next morning. Thus opened up a cycle like one I haven’t had in a long time. Some days with 3-6 hits, some with none. All worried about it.

I’ve burned through almost a half dozen Imitrex injections. Once even doing two in one night in desperation in a hotel room up in Michigan. The Imitrex experience at this frequency is not as pleasant as the rare “hail mary pass” that it used to be. There is the alleviation of the headache but the clarity is not as fine as it once seemed to be.

So here I am. Spent. Worried. Humbled. Pissed. Counting the days till I can get my old hypothalamus back from the shop.

F%&K!

Scott

(I hijacked my own thread.....the ultimate act of narcissism?)

Back on topic -- the Pred has worked great for Dad and he is tapering down now. Crossing fingers that he can extend the relief. He's confident enough to go on a trip with some old buddies this weekend (along with some Imitrex of course)

Title: Re: Cluster and Chemo
Post by E-Double on Mar 3^rd, 2007, 5:55am

1) Glad Dad is doing well on both fronts!!!
2) It appears that you feel like the increase in hits may coincide with the increase in attacks that so many of us have experienced.
Talk to your doctor about zyprexa. (sounds like a commercial,,,,,so here it goes)

If you want an abortive that comes without the side effects of triptan; increase in attacks, the burn, the yuk, the fuzzies, then you may be one of many who can find relief using zyprexa (olanzapine) Ask your doctor.

Bob J has been talking about this for yrs and I started singing its praises almost 2 yrs ago when I couldn't catch a break.
It works as quick as imitrex without the crap associated with it and don't be swayed by the class of medication (antipsychotic)
I'll give ya the research to go along with it as well if you want.

It remains the one medication that if I need to take out of desperation (public/working) that I would or do not hesitate to take and do not worry about any increase in attacks.

Good luck my firend.

E

Title: Re: Cluster and Chemo
Post by nani on Mar 3^rd, 2007, 9:07am

Good news about your Dad, Scott. Terrible news about your head. :-/
Check your PMs, sweetie. hugs and pf wishes, nani

Title: Re: Cluster and Chemo
Post by seasonalboomer on Jul 9^th, 2007, 6:43am

Just a short update ---

My Dad is laboring on in his fight against pancreatic cancer. He is now just short of 1 year since his diagnosis. That is 7-9 months longer than the first doctor gave him. They have engaged hospice at this point and that has brought him and my mother some peace.

He's been HA free since early March so no more worries there. I don't think, with the amount of morphine they've got him on now, that he would even notice if they did come back.

I've appreciated the many thoughts over the year from everybody. And Tim, you're a special person. Throughout all you deal with, with your CH, your compassion and caring is still there, day in and day out.

As for me, after the long shitty cycle I had from Jan-Mar, I got an abnormally short reprieve and seemed to have stumbled headlong into a strange cycle this summer. The only bonus (if there can be one) is that alcohol doesn't seem to trigger -- only getting overheated so far. So, sitting down in the shade with a cold beer is actually not considered risky behavior this go-round.

Had fun the other day. Went running at about 5:30 am -- Saturday morning long run. 3 miles short of home it ramped up quickly to about a Kip 8. The people I passed on the rest of the run home must have been horrified.
What a mess. Too strong and well-established for O2 to whack it I have the GSK gods to thank for giving me the rest of my day back.

Anyway, keep Dad in your prayers. He's given it a good fight.

Blessings to all.

Scott

Title: Re: Cluster and Chemo
Post by taraann on Jul 9^th, 2007, 8:54am

Wow will do Scott!!!!!!!!! Friggin Cancer sucks. (We have been fighting cancer left and right in our family.) And I swear only the strong are picked to battle it! So sorry to hear your dad has to endure it! Truly! plus to have to have Ch come back too. Hopefully it stays numbed from the morphine Big huge hugs and prayers and vibes.

Title: Re: Cluster and Chemo
Post by E-Double on Jul 9^th, 2007, 8:42pm

PF andpeaceful wishes to you all !

Title: Re: Cluster and Chemo
Post by Jonny on Jul 9^th, 2007, 9:20pm

:'( :'( :'(

Title: Re: Cluster and Chemo
Post by DennisM1045 on Jul 10^th, 2007, 1:40pm

Hi Scott,

Your Dad has given it an amazing fight. I lost my own Father in 2004 to the same form of Cancer. He only lasted 2 months. My heart, prayers and vibes go out to you, your Dad and the rest of your family. If you need someone to talk to who has been down that dark road, PM me and I’ll send along contact info.

Take care…

-Dennis-

Title: Re: Cluster and Chemo
Post by DennisM1045 on Jul 22^nd, 2007, 9:03am

Hi Scott,

How are you doing? Haven't heard from ya.

-Dennis-

Title: Re: Cluster and Chemo
Post by seasonalboomer on Aug 6^th, 2007, 12:45am

My dad, Peter Evans, fellow clusterhead and all around good guy, passed away this evening at 6:30 pm after a nearly year-long battle with pancreatic cancer. He taught me how to deal with CH and how to live between the hits and the cycles.
I'll miss him. I was able to be with him as he moved on.

Thanks to my cluster family for your support over the past year. My family thanks you for your prayers, wishes, thoughts and vibes.

Best regards,

Scott

Title: Re: Cluster and Chemo
Post by George_J on Aug 6^th, 2007, 1:33am

:'(

I'm so sorry to hear this, Scott. My very best to you and your family. Your father sounds like a fine man.

He was fortunate to have a son like you.

My sincere sympathies.

George

Title: Re: Cluster and Chemo
Post by MJ on Aug 6^th, 2007, 2:06am

My thoughts are with you Scott.

I lost my father in a similar way many years ago.

Sincerely, MJ