Thursday, April 21, 2011

Cisplatin, Gemzar and Me

There is a slight possibility that you landed at this blog, not because you know me and are being a faithful friend or family member, but because you googled something cancer related…like maybe Cisplatin and/or Gemcitabine (Gemzar). Before I first began this regimen of chemo, I did the exact same thing...and a few times afterward.

So, I thought it would be appropriate to give a rundown of how the Cis/Gem combo has affected me, now that I am seeing the light at the end of this long, difficult tunnel.

As of today I've undergone 11 infusions since January. I've received these in 2 infusions every three weeks. Week 1 was the wicked infusion of Cisplatin and Gemzar (a full day), week 2 was the much easier Gemzar alone (about 3-4 hours), week 3 was recovery week...multiply that by 6. I have one final infusion of Gemzar, which will occur next week.

This chemo regimen is not typically given to fight breast cancer, but there is good reason for mine. Perhaps that will be a future blog post.

My first infusion and its aftermath has already been documented, so I’ll not go into that, other than to reiterate what I’ve said before…Cisplatin is sometimes jokingly called Sickplatin (if it's possible to joke about such a thing). There is a very good reason for this. I had one chemo nurse tell me she thought it was one of the top 2 or 3 drugs that was known for bad side effects. 

Right now I am feeling those side effects, both the residual and ongoing effects that come from months of treatment, and the short term nausea and fatigue that will go away in a few days (although I have read that fatique can sometimes take months to overcome). Since my final (God willing) Cisplatin infusion was the day before yesterday, I am chipping away at this post, one paragraph at a time. Hopefully I won’t say anything too confusing, but if I do I blame it on the Zophran and Compazine, my anti-nausea meds. Not only do they dissipate the nausea, but they also tend to dissipate the thinking. And then there's chemo brain...

As far as long term side effects, I’ve had a few...

Fatigue and Red Cells –
This, I expected. Doesn’t all chemo have fatique as a side effect? When I underwent my three (unsuccessful) treatments of TAC last fall, fatique was a biggie. So I expected the same for this regimen. In my case, this fatigue thing has gotten worse each time as my red blood count has gradually dropped. This has nothing to do with my changed diet and the fact that I am no longer eating red meat. I could be eating a side of beef a week and the red blood cells would still be killed off. Thank you Cisplatin and Gemzar.

This lower RBC count led to my first injection of Aranesp several weeks ago. After going home and googling this drug, I was shocked at its possible side effects and immediately put a nix on any further injections. To put it lightly, I was unhappy and frankly, shocked. (Look for a future blog/rant on Aranesp.) My boycott of Aranesp is what led to my first blood transfusion following my last Cis/Gem infusion. Blood transfusion I can do, Aranesp no.

The fatigue, however, was unbelievable. I learn best from actually experiencing something and my lesson from this experience is that our red blood cells are REALLY, really, reeeaaly important. Diminished RBCs leads to extreme weakness, dizziness, and shortness of breath, among other things. Standing in one place for more than 2 minutes (like brushing teeth or washing face) was extraordinarily exhausting. At my lowest point I remember asking David to check on me during the night and make sure I was still breathing. I just wasn’t sure.

White Cells -
On the other hand, my white blood cells (those important little things that battle bacteria and other invading nastys in our bodies) were kept up through a shot of a drug that I do approve of, Neulasta. I called this my golden shot after I got a look at the first bill. One little injection cost $3900! Thank goodness for decent medical insurance. I guess this crazy expensive shot is still cheaper than an infection leading to a hospital stay.

Swollen Ankles -
This has progressively gotten more pronounced throughout treatment. It typically appears toward the end of a cycle and stays for about a week. Watching salt intake, drinking plenty of water, and keeping feet elevated seems to help. Since Cisplatin could possibly cause kidney damage, they watch for swelling. Mine has not been terribly severe and they have done blood work regularly to check kidney function and everything seems okay, so I’m not worried. Also, Dr. Beck said that Cis/Gem (particularly Cisplatin) has a very high salt content (it is a platinum salt) so that doesn’t help.

Appetite –
Oddly, for about 10 days following the infusion, this teeters between nausea and the need to eat every two hours (even throughout the night). If I don’t get food in my stomach regularly, the nausea and overall bad feeling increases. I think a lot of this ravenousness is related to the steroid that I get during my chemo infusion (which has also been responsible for my flushed and rosy complexion for a couple of days following the infusion). Favorite foods during my worst days have been oatmeal and Ezekiel toast, vegetable soup, beans and cornbread, organic granola, omega 3 eggs (any form), sautéed spinach, sautéed broccoli, pad thai, tacos de pollo, and watermelon.

Bad Taste –
Something that almost all chemo brings is a bad taste in the mouth. I have always read that it is a metallic taste, but I have never experienced that. Instead, I get one horrible sourish, yuck taste in my mouth for a good 10 days following the Gem/Cis infusion. It’s sour, but not like I just ate a lemon pie sour. Not a good sour. More like I’ve been licking the floor of some hoarders kitchen. Really nasty.

Eating helps (until I stop), brushing teeth helps (for about 5 minutes), peppermint gum helps (until it starts tasting sour).

Way back when, I remember thinking…"A bad taste in the mouth? How bad can that be?” Well, it can be bad. I get tired of the just plain grossness of it. Gets old in a big fat hurry.

Ototoxicity –
Somewhere between the second and third round of chemo I noticed a nonstop ringing in my ears. You know, like when there’s a tea kettle going off somewhere way back in your head. For most people this usually lasts only a few seconds, only mine suddenly wasn’t. Then I started noticing certain noises irritating and almost hurting my ears...paper crumpling, pots and pans banging in the kitchen, dogs barking. When I was listening to NPR in the car one day I thought something was wrong with their signal, or maybe my speakers, and then realized it was my hearing! That’s when it hit me that the somewhat rare Cisplatin side effect of ototoxicity was not just knocking on my door, but had let itself in!

From what I’ve read, there is a good chance that this is irreversible, but not always, so I am praying that my hearing will improve over time. Or at the very least not get any worse.

Bruising –
Less than a week ago I noticed some serious looking bruising on the back of my right leg. Really serious…black and blue and about the size of my hand. Within that bruise were several lumps. Yikes! I am not comfortable with lumps. Then I noticed other bruises on my legs, almost all with a small lump involved. The blood vessels in my leg were leaking! What the heck? I’ve had this same thing on my fingers at times over the past few years and have been told by my family doc that it’s not uncommon and nothing to worry about. Lately, I’ve had a couple of ruptures on my thumbs. The legs, however, are something entirely new and unexpected…no where have I read of such a side effect.

Of course I asked Dr. Beck about this when I saw him this week. He checked these bruises and now diminishing lumps, then shrugged, said everyone was different and chemo affected each person in its own way. Apparently small outer blood vessels that happen to be leaking are okay, the opposite of blood clots…which would be much more concerning. My platelet level has been down, which does lead to bruising, so maybe that’s the reason.

Slow Motion Hair Growth –
One of the last side effects listed for my chemo regimen is hair loss, but I was told I would not lose hair. Been there, done that…don’t want to do it again.

I was happy to know my hair would return during this treatment. However, I know the growth has still been affected. How can I tell? I only need to shave my legs every other week, as opposed to my norm of once a day. So my hair is growing, but very slowly (and very curly…future blog post coming). This is a minor side effect, but still a side effect. I’m certainly not complaining about the minimal leg shaving, that’s for sure.

Chemo Brain –
This is one side effect that has been receiving a lot of discussion and study lately. I have become a firm believer in its existence. Now, whether it is a physical or more of a psychological problem, your guess is as good as mine. I can’t help but think that it is a combination of both. Being washed throughout with toxic chemicals multiple times cannot be good for brain cells. Also, the constant stress of medical appointments, missed work, financial issues, loss of control, fear of recurrence, chemo side effects, surgery side effects, and more can really do a number on one's thought processes.

I misplace things (sometimes very important things) much more frequently than I ever have, I find myself unable to think of specific (simple) words at the oddest times, I forget the names of people I’ve known for years, and I’ve found myself placing items in the fridge that belonged in a cabinet and vice versa. Oh, and if I tell you I'm going to do something, be ready to remind me a couple of times...don't believe anything I promise.

I pray this leaves as soon as all of this poison makes its way out of my body. I want my brain back!

So, that’s a rundown of the side effects I’ve experienced over the past 4 months. I'm sure I've left out something big, thanks to chemo brain. I know these side effects are different for each person, and I know there are people who will undergo treatment with Cisplatin and Gemzar who have almost no side effects. If you are one of the lucky ones, that’s great, congratulations, and praise God! If not, just know it’s temporary and take one day and one week at a time. Allow others to help you and if they don’t volunteer, then speak up and ask!

And above all else, may God bless you and be with you through it all.

17 comments:

  1. Hang in there.

    I had cisplatin and gemzar for nasopharyngeal carcinoma. It sucked.

    Mark

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  2. Thanks, Mark! I'm feeling better everyday and thankful for it. So glad to have this treatment in my rearview mirror. Hope you are doing well and that Cis/Gem did the job for you

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  3. I'm getting ready to start cis/gem. I have "triple-negative" breast cancer diagnosed Oct., 2009. Had taxotere/cytoxan, then it came back in 5 different visceral tissue locations and fluid in pleural cavity. Then avastin/abraxane, "remission" PET scan in 2/2011. Then, in April, fluid came back plus tumors on chest wall. Now, we're gonna try cis/gem and I'm dreading it. I was able to continue working through the others. I need to work to keep my insurance...I'm about to turn 58.

    Ginny

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  4. Hi Ginny - I am so sorry you are having such a time with this horrid disease. I think the Cis/Gem combo is being used more and more for aggressive breast cancers like ours. When my tumor was sent for profiling to Dr. Nagourney at Rational Therapeutics, he said he had had many good responses from breast cancer patients who used this combination.

    It IS a tough one, however, but not everyone gets knocked as flat as I did. My oncologist said he had one patient who barely noticed anything different. I'm very thin (too thin) and I had to wonder if that made things even worse for me.

    I understand about the working and insurance thing. Thankfully, our school district covers us with a disability policy, so I was able to get that after I'd used all my sick days and the days allotted me in the sick leave bank. Isn't it just awful that we have to worry about that when we are fighting for our life?

    God bless you, Ginny. I will pray for healing and for strength during your upcoming treatment.

    Patti

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  5. Hi Patti, great to see you still have a sense of humor, I love that! I endured Cisplatin with Taxotere after I finished the standard AC. My onco switched out from Gemzar to the Cisplatin literally just before my second regimen started. (Consulted with her peeps at Dana Farber she told me) Lucky for me I then got the day off until the new meds were ready.
    Was diagnosed with TNBC IIIa in Sept 09, big ugly tumor (9cm), but I think the chemo, combined with my dietary and lifestyle changes, worked well. Everything disappeared, hopefully forever. I read your description of side effects. I experienced many similar effects, especially the ototoxicity and chemo brain, which sad to say neither has disappeared at all. (Clinking corningware banging pots just about kills me!) I learned to live with it however, and still feel extremely lucky anyway. For I am here to post this! :) My thoughts and prayers are with you. Veronica

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  6. Thanks for the comment, Veronica! It's a definite encouragement and came at the right time. I guess with TNBC I will be a paranoid hypochondriac for quite some time. It's always good to hear from people like you! Best wishes and blessings to you!

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  7. Triple negative spread to both lungs. Have now had 8 treatments & ninth tomorrow. Tolerating it really well. Tired even though my red blood count is ok & just feeling of nausea.

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  8. My husband is going thru Cisplatin for nasopharyngeal cancer and he cannot describe the taste in his mouth. It's not "metal". I can't wait to tell him your description of gross sour like licking a hoarder's floor. He has been trying very hard to describe it to me and you have finally given me an inkling of what he is trying to tell me. Thank you.

    God's blessings to you and your recover.

    Nice resource. Thank you,

    Kelly

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  9. Hello,
    My Dad was diagnosed with stage 2/3 Invasive Bladder Cancer, we went to Dr. Briccetti today and he wants my dad to start Cisplatin and Gemzar treatment plan, for the next 12 weeks before removing the bladder. My dad is a healthy 66 yr old, quit smoking 2 years ago and eats a pretty good diet. I am in hopes and the CT scan revealed that it is contained to the bladder walls. The doc wants to make sure that there are no stray cells lurking in the body before surgery...It started with blood in the Urine, ALLOT of blood, but no pain...I Pray this will help,..God Bless all of you, in my prayers..Kim

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  10. I also had the gemcetabine and cisplatin combo for asbestosis and experienced all those awful side-effects including throwing up constantly, hearing loss and chemo brain, anxiety and complete memory wipe for weird little things. All have cleared up to a certain extent and four years on I am still around full-time working to tell the tale. Don't give up hope whatever you do, I know it's horrific and as a way of dealing with it now I constantly relive in my mind what I went through only like some sort of war hero. But I am still here. My positive energy goes out to all who have to suffer this, I pray for you all. Sue

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  11. I would like to thank for creating this interesting blog and i think most of the peoples are getting good knowledge from here get more about anticancer. Anticancer Manufacturer in India

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  12. I have just finished my last Cisplatin Combo this week, the strangest thing I have experienced is that my Vision improved a little bit . Fatigue and listless sensation were constant. The combo really affected by digestive tract, it was like it a strange acid burning feeling accompanied by bouts of very bad gas and diarrhea . I noticed periods of irritability and frustration over minor things when I had my combo weeks. I wonder what this has done to my brain over the long term from now. I am looking forward to getting back to exercising and getting what I call this poison out of me for good.

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  13. I had 4 rounds of same treatment as you. Sounds the sam except for taste I can't eat milk chocolate. The ringing in my ears is worse and chemo brain. I the first of October but I still have days that feel like I'm still taking it. Good luck with your battle.

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  14. Thank you so much for sharing your experience. I am 65, female, diagnosed with bladder/ureter cancer. Diagnosed in Novemeber after a year of UTI diagnosis....Please don't let UTI disgnosis stop you from digging deeper. I started Cisplatin and Chemzar last Tuesday. I am slim, had good muscle mass before I got sick....The 1st treatment went ok. I have lost bout 14 pounds since this all began...w/ chemo its falling off faster...The day after was better than I thought. Then I hit the wall the net day. Headache, cold, hard to swallow (acid refluz, so terrible...Ears closing? Then blowing out. The nausea...Bad. But meds help. No appetite...A taste in my mouth like no other...and the smell of food makes me sick.........I am about to start Gemzar alone , in 2 days...Right now, I feel pretty good. 4 hours ago I was in misery...I take care of my 87 year old Mother so I am stressed out....Who is taking care of who? I lost my health insurance, but Medicare helps......I am supposed to be gutted, lol in October. Have bladder removed/hysterectomy....I too have a little chemo brain or stress brain...I thought about just saying NO WAY, I am not going back........But I will. I hope and pray everyone gets the all clear and I hope your side effects are few.....When I get through this I want to help people like me...Trips to docs, grocery stores, clean house, whatever....Because things like that I have a hard time with sometimes...I am so glad I found this blog because it gives me hope....Some say the first round is the worse....Who knows...I hope so. God bless ya'll and side effects, BE GONE!

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  16. I was diagnosed with t-3 high grade carcinoma in my bladder wall. This was may 2013 first action go in and cut out as much as they could and start chemo. I also had the platino/gemzar. First treatment was both on same day,then gemzar alone in week 2 & 3, rest on week 4, 3, months of this. What a run down feeling no appetite, ringing in ears no felling in my feet. Then I was to have my bladder removed, last minute I said no. So now I went with 37 radiation treatments and 4 what they call super sessions of platinol, oh man never have I been so sick, I would throw up for 7 days this never happened in the first rounds of chemo. Bottom line that was ,4 years ago and I still have my Blatter they just looked, no tumors looks normal. The bad part is I still have no feeling in my feet, ears still ring, very nervous all the time, pace, the chemo just changed me and still changing me, wife does not know me anymore. Now I know I am not the only one with these problems. My heart go out to everyone with this disease. Platinol and gemzar did save my life and add time and grateful for that. Everyone needs to research thier cancer, they wanted to cut me up, that is west coast I am told. They never told me about the Harvard methods which is little slice, lots of radiation and pound you with chemo. Best of luck to everyone reading this. William

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  17. I keep looking for side effects of cisplatin and gemcitabine now that I am six months post chemo (8 sessions) and post surgery for bladder removal. I did have many of the side effects listed on many sites during chemo but I have many weird things as the drugs fade from my system. Everything that happens now I just put down to the chemo drugs. The first was tongue swelling in the middle of the night. I had to go to Emergency for fear that my throat would close off. The swollen tongue barely allows you even talk. It was like having a mouth full of marshmallows! The hospital gave me antihistamine. This happened another 5 times but less intense each time over many weeks. Next was feeling like ice in my veins during the day and heavy sweating during the night. This lasted for about six weeks. Other side effects have been itchy hands and feet for a few weeks and I mean very itchy. Then there was a sever pain in the chest when I tried to ride my bike. If I stopped til the pain subsided and started riding again the pain would not return. I was terrified that there was now an issue with my heart. My oncologist assured me it was yet another side effect and it would go away. It is better now but not all gone. I had to have blood transfusions twice due to low blood counts and anemia. Also had to take iron pills for a month and deal with horrific constipation. The blood numbers are great now. This week I have a very unusual ringing in the ears that sounds like radio interference. It is not constant but occurs many times during the day. I am waiting for this to go away. Does anyone else have any of these side effects? I was declared cancer free in April and just the got a 13 week 'all clear' and I am very very happy. My hair is thickening up now and my eyelashes have grown back. It has been a horrific experience and one I hope I never have to repeat. I am just dealing with 'chemo brain' now - very forgetful. Thanks for the input from all the other people on this site. It was encouraging.

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