Reaction to alimta

[Yorktown Linda]

On May 28th I had my first chemo -- avastin, alimta and paraplatin. The next day I spiked a fever of 101.6. It came down with tylenol but bounced up and down for a few days. My oncologist suspected an infection and started me on levaquin on 5/30.

I saw my internist on June 2. By then the fever had resolved but my blood pressure was very low (and I'm usually hypertensive) and my liver enzymes were 6 - 7 times normal. (They had been totally normal the day before the chemo.)

I was admitted to the hospital and put on IV fluids and anti-biotics. Had blood and urine cultures -- negative -- and liver and chest CT scans. The liver scan was normal; the chest scan showed a haziness at the site of wedge resection (4/28) but radiologist was unsure how to interpret this. No other signs of pneumonia.

After several days in the hospital my liver enzymes dropped to 5 times normal. Blood pressure back to 120/80. No definitive answer as to what caused the fever and hypotension. I'm now home on oral anti-biotics and will have liver enzymes monitored by my internist.

My gastroenterologist is sure that the liver problems are a direct result of the chemo. My oncologist says he's never seen this, though he has little experience with alimta. I posted a question on cancergrace.org and Dr. West replied that alimta can definietly do this.

The gastroenterologist wants to defer further chemo until my liver enzymes return to normal. Chemo had been scheduled for every 2 weeks as CEA was elevated. My oncologist volunteers at Sloan-Kettering on Tuesdays so I'm sure he'll be consulting some experts today.

Anyway I'm sitting here worrying when or if I will be able to continue chemo and whether or not I'll wind up in the hospital again after I do.

I would say that I hate this but it is truly better than the alternative!

Linda

[CaroleHammett]

Hi, Linda.

I had my second Alimta infusion last Thursday and on Saturday I woke with both a fever and low pulse rate; i.e., my normal temp is 93-95 degrees and I was up to 99-100 degrees; and my normal pulse rate (post chemo/radiation) is over 100 (for which I take Diltiazem), and I was down to 59. My palliative care doctor believed both these symptoms were the direct result of the Alimta infusion, and she temporarily stopped the Diltiazem.

By Monday, my pulse had begun to rise again, but my temp is still jumping around (over 100 when I woke this a.m.). As per palliative care doc's instructions, I am taking it very easy in the meantime.

I haven't had any blood work, so don't know about liver enzymes, but when labs drawn last Wednesday (day before infusion), all was well on all fronts.

Carole

[SandraL]

Thanks for posting this information Linda and Carole. Although I have to say you have got me worried as I am going for my first Alimta infusion today! But I know now what to keep an eye out for and I have seen other posts as well that will keep me on the alert for symptoms.

I hope you are both feeling better soon.

Wish me luck

Sandra

[CaroleHammett]

Hi, Sandra and Linda.

I ended up having to go to ER this afternoon (oncologist's orders) due to fever, but cxr showed no new inflammation (as vs. last week when I had pneumonia) and blood tests came back better than they were pre-infusion.

ER doc had no idea why I'm running fever, said it could just be side effect of Alimta, but that I definitely was not neutropenic or anemic, nor any other sign of bacterial infection, etc. Also, urinalysis came back clean.

I'm feeling tired and wimpy, but that's apparently primarily due to fever, but the great news is they didn't have to admit me and I'm back home in my own bed!

Hope all goes well with both of you, too!

Carole

Life is a Terminal Condition

[SandraL]

Good to hear you are back in your own bed Carol. I am burning close to 38 as well but it was going up before I even got there for chemo today so I will just keep an eye on it! Infusion went fine except for usual fun and number of nurses to get it going. Looks like me veins have not recovered from last round of chemo! Darn!

I also have to go for separate Zometa infusions, for like 6 months. Those are administered at our local hospital.

For alitma, I have to go for blood work every week and same for the Zometa (not sure about every week but once a month for sure, appts for those haven't been scheduled yet... I wonder if I will have any blood yet. B12 injections are done at my gp's office. Lots to keep track of.

We should keep looking out for each other, and any others of out there should join the alitma crowd.

I have spelled that drug name wrong so many times but think I have it now. So to help me keep it straight, am thinking we could be called the "Out on a Limb" sisters or group if we get some men to join in. Cause that is how we are all approaching to continue our lives, out on a limb and wtih fun and attitude. I for one am having a greek tog party this weekend, no matter how rotten my back feels or how crappy I am feeling from chemo. It will be the most santized party going with constant reminders for all to wash their hands...but hey ouzo cleans your hands up real good right!

Take care ladies

Sandra

[CaroleHammett]

Ouzo as an antiseptic? Why not!

You go, girl!

Carole the Incorrigible

PS That's Alimta,not Alitma, but no prob. We all know it's the same thing--whether inside or outside chemo fog!

[fillise]

Sandra--Has anyone sugggested getting a port? My mom had a terrible time with her veins for the chemo and got a port in her left arm. Now that part of the chemo is a breeze.

Susan

[Maryanne]

Darn, I hate for what you are all going through. But you must stay strong and get through this. I know that's easy for me to say as thank G-d I never experience chemo or anything like that.

My husband had some setbacks also. So I can symphasied with you.

Just know that Im thinking of you all and pray its gets better.

So sorry...

Maryanne

[SandraL]

Hi all.

Susan, I have heard of "ports" but I am a major medical wuss. I have trouble with even bearing the thought of a port in me all the time...don't think I could sleep! But if it gets too bad then maybe I will need to go there and it will be better than the alternative.

Carole, I cannot believe I spelled that darn drug name wrong again...and honestly I am a smart girl. So it's Alimta, anyone who is on it then , is now automatically enrolled as a member of the "Out On a Limb" Club. I think I will be able to remember that easier!

So anyone else who is on this drug, please feel free to join on in and tell us when you started on it, what your side effects have been and what success you have had with it.

[jaminkw]

Oh Sandra, think about doing the port. I have a daughter who is an RN and she had very compeling reasons for it so I did it. I admit it was freaky for awhile but I notice how used to it I'm getting. When I do think about it, it's no big deal anymore.

Judy in Key West

[SandraL]

thanks Judy. Can you share some of those compelling reasons then? Other than the obvious re not having to get poked every time.

[recce101]

From SandraL, about getting a port:

Can you share some of those compelling reasons then?

How about this June 11 post from DonM, who apparently doesn't have one either:

I started taxotere yesterday. About 20% of it ended up in my muscle tissue instead of my vein and I had to go home with a fat arm and put ice packs on it...

Don, you wanna jump in here?

Aloha,

Ned

[CaroleHammett]

Hi, Sandra.

Re getting a port, I can "testify" personally that it's not a big deal (you'll want to pick up a waterproof "sleeve" for ease in taking showers), and well worth it if your veins are weakening.

Given that you are not only going to have infusions, but constant blood draws, I'd go for it if I were you as (a) your veins can only get worse without it; and ( it makes everything easier and simpler (which is always my goal! )

In the meantime, I am still running fevers and blood oxygen is still down, both of which tend to weaken me, but now that we know it's apparently a symptom of Alimta (as vs. an infection), I should be able to stay out of ER for a while!

Carole

PS to Linda: You're absolutely right. Being "out on a limb" sure beats the alternative!

[jaminkw]

O.k., I'm not a medical person so I'll do this the best I can. When they have to infuse with a needle every time, each infusion carries the risk that they'll miss the vein and the fluid will go through the body outside of the bloodstream. If that happens, my understanding is there can be dire results. All I know is my daughter told me something like that and added "and you don't want that to happen" in that you'll be sorry daughter's voice . Anyone else know about this? I never heard of the port in an arm though, so I can't comment on that. Mine's in my chest.

Judy in Key West

[CaroleHammett]

Hi, Judy.

Mine was actually a PICC line rather than a port, which may be why it was in my arm as vs. my chest? I don't actually know what the difference is between the two. I do recall that my PICC line had to be cleaned (sterilized and rebandaged at entry area) weekly, but don't know if this is true for ports or not?

Carole

Out on a Limb!

[jaminkw]

Ned: There you are! I was about to pm you because you've been way too quiet lately. I had totally forgotten that what I am talking about caused Don's swollen arms. Thanks.

Carole: The PICC line that I never heard of explains the waterproof sleeve. No the port gets wiped with sterile solution, you take a breath, a little stick and a small bandaid on for a short time after the infusion. No fuss, no muss, no keeping it dry. But it sounds like you're have a rough go these last few days, you and Sandra and Linda. I really really don't want to be in that Altima club. Hope you all feel better soon.

Judy in Key West

[CaroleHammett]

Thanks, Judy.

I still don't know the difference between a port and a PICC line, nor what might make one better than the other, but I did just find this in Lungevity's glossary (which doesn't include an entry for "port"):

"PICC Line - A peripherally inserted central catheter, the PICC line provides access to the blood stream for administration of medications and blood products and for taking blood samples. It is inserted in a large vein in the arm, and extends from there to the large vessels in the chest. It may stay in for weeks or months. It may be inserted by a physician or specially trained nurse."

Carole

[jaminkw]

Carole: There's one difference--port's inserted by a thoracic surgeon. That's means the convenience of not having to worry about getting it wet costs big bucks!

Judy in Key West

[recce101]

Another difference is that the end (beginning?) of the PICC line is outside of the body, hence the extra precautions required. A port is implanted under the skin, and is accessed by sticking a device with a tiny needle through the skin into the below-skin chamber. It's pretty much an ouchless thing, though some people like to use an anesthetic cream before being stuck.

Mine hasn't been used for chemo since September 2007, so I have to go in once a month to have it flushed (accessed, then a small amount of saline injected), 2 sticks and about 5 minutes for my double chamber port.

Ned

[SandraL]

Thanks for all the good info everyone. I will digest it all and consult with my medical people! Trust me when I tell you they know me as a bit "high maintenance".

Sandra

Out on a Limb! ....and lovin' it!

[CaroleHammett]

Just a quick update:

Fever's been spiking on and off for days and Friday afternoon, it hit 101.7 and oncologist ordered me to get checked out at local ER. They could find no change from when I was there on the 06/01 and, in fact, no longer think I had pneumonia (since they don't have access to all my oncology records/tests, they can't easily differentiate between pneumonia, pneumonitis, firbrosis, etc. on my cxr). My blood draws and urinalysis also both came back clean.

I've been on three antibiotics (Levoquin, Avelox and Cipro) since the 1st and after conferring with my oncologist, ER doc told me to stop all antibiotics in case they are "suppressing" an infection (in hopes it will show up in a few days in blood work). They also seem to think it unlikely that the fever is Alimta-related; and the ER doc suggested that if it is not due to infection it could also be "cancer fever," which I hadn't even heard of.

The good news is that they discharged me and so I'm back in my own bed again and for now my temp is down and I'm off to get some shut eye.

PS I'm also still having computer problems and was offline from Thu pm until Fri nite. This may happen again over the weekend (I'm using loaner while my computer guy looks at mine) so not to worry if I disappear on you for a couple days.

Carole

[SandraL]

Hey there Carole. I have had a fever as well this week...but I swear it started earlier in the day before I went for chemo. And yesterday, was awful, lots of nausea, headacahe and upset stomach. Went to be real early and slept terribly. I do not think this is all from alitma but I sure am wondering. Hope you are feeling better soon. And that you get your computer back...us LC girls sure do seem to need our computers lately! Have a good weekend.

Sandra

[Patti B]

Hi All-

I have been on Alimta for about 7 - 8 months now and have never experienced the fevers with it - just fatigue and SOB which is VERY common with Alimta. I have a new development over the past 6 weeks of swelling HORRENDOUSLY of my feet (especially my left foot) which is supposedly related to chemo. My left foot is abnoramlly gross and swollen, blood red to about the sock line, shower water burns like salt in an open wound, and then my foot peels like a sunburn. They tell me it is NOT a blood clot because my right foot does swell and turn red but nothing like the left one. Doc says that as more and more people are staying longer on Alimta, he is getting a lot of these complaints. I have told them tese symptoms are NOT bad enough for me to come off the Alimta - hey, its working, who knows if the next one will.

Sandra - I am with you on the port. Not that I am afraid of the procedure, I really don't mind being poked and prodded with needles. To me, (and someone out there may yell at me about this) but I just feel that its one more way of "giving in" to cancer. Don't know why I feel like that but I do.

Hopefully after my scan (I will be posting soon about that) I will still be on Alimta. We will see.

Hugs to you - Patti B.

[jaminkw]

Sandra: So sorry to hear you're not feeling well either (Carole too). Come on ladies, I'm in your corner here sending you all the positive energy I can muster. I was hoping we could do a little computer "girls just want to have fun" stuff again.

I know about the need for the computer but add the internet to that! I don't know how I'm going to handle being without it for most of my five-week travel. Be sure I've already located the hotspots in the area of NJ where I'll be staying and will be checking in/up on everybody from there and when I'm in and out of Orlando.

Judy in Key West

[jaminkw]

Patti: Ouch! That sounds awful. Didn't ignore you when I posted here last--we were both writing at the same time and must have pushed submit in a minute of one another. Cool, huh. Since this disease, it doesn't take much to amuse me.

On the subject of a port like most things I think it's to each his own. Although I ultimately make my own choices, I was very influenced by the oncology-nurse-daughter in the beginning. Don't think I'd change my decision though.

Patti, feel better soon. Hope you get to sit around a lot and elevate that foot. It's one thing I know of from my husband that really works for swelling of feet and legs.

Judy in Key West