Chemotherapy for Stage IV
Comments
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Calico...they must've had a sale on long-sleeved shirts!!! My onc has those same tricks up his sleeves! It gives me hope. I'm so far behind on how sisters are doing...had to take a little break because my mind was starting to wallow in what-ifs and forgetting to enjoy the todays...you say it very well, Beach!! Thinking of all.
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I'm so sorry, freebird, I know sometimes I just crawl in my husband's lap and boo-hoo. There have been times over the last 8 years when the grieving child in me wanted my mother. I turn to every resource for comfort and peace. The blessed women on this site are a huge part of that.
Sending you hugs through the ethers and prayers for peace and healing.
xxooxoooo
Calico
P.S. Your baby is precious. Thank you so much for sharing your picture with him. Gorgeous earrings, by the way!
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Thank you, Beachbum and SyrMom and all! Appreciate you so much!
I think it was M360 who gave me a heads up about infection with this hand thing, and that makes perfect sense. I had forgotten about Aquaphor (is it)? The aloe vera stuff that worked so nicely during radiation? I think I'll rotate what I use. I need to constantly be putting something on my hands, so what the heck. I don't think doing that will hurt anything. My onc recommended "Jean's Cream" 4 times a day, with gloves at night, and I bought some, but very expensive, and I don't think there's anything magic about it. HIs nurse practitioner and nurses had each recommended something different, so there you go.
I can only imagine, SyrMom, how much worse the side effects were after extended treatment with Doxil. So sorry you went through that, and glad we are both off of it.
xoxoxoxx
Calico
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Calico - actually I only had 2 infusions of doxil & had that reaction - it was considered toxic. Luckily, I didn't have a third infusion cause I don't know where I would have been, but I do know it wouldn't have been a good place!
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Oh, I'm so sorry freebird! I'm mostly lurking on this thread but I am sending you big hugs and hopefully you'll feel better tomorrow. That's what I tell myself. I'll feel better tomorrow (and then I take a Xanax). And then I try to think about all the new developments in treatment and how they find better and better drugs. We are all here for you. On the insomniacs thread there is a picture with a bunch of meerkats hugging. I absolutely love it because that how I picture us all in a collective hug!
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freebird and Beachbum- my heart and prayers go out to both of you.Yep have been there to and its not pretty. Remember- this too shall pass. I only made it to my mail box on good days and wanted to be invisible if a neighbour saw me and asked how I was. Am sure they could see for themselves as I didn't have energy to respond. Just remember to spoil yourself on your better days. Our pets help us much more than they know don't they. Eat something sinfully good as often as you like- OK.
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Grammy R, Thank You so much! This is quite a ride isn't it? I have fish and I love to watch them, so peaceful and they don't talk. Some days it is a good thing. So it's ok to treat myself to ice cream and hot fudge? That is my guilty pleasure on the way home from rads. But after gaining 10 pounds and 33 rads it may have been a few too many treats. But worth it. LOL
I hope you are feeling better, Spring is here. Take Care.
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Calico, I hope you had a great day! I had sunny blue skies, puffy white clouds, and the ice is melting on the Lake. I finish rads in the morning, and moving on. I am just going to enjoy the break, and hope that chemo won't happen for a while.
Question - I have my runny nose back, I hope it is not still left over from chemo. Have you had side effects return after the end of chemo?
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Hi, Beachbum and all! Beachbum, your view sounds absolutely glorious! Wonderful!
The only returning side effect I can think of was some radiation recall, and I think it was early on with the Abraxane. Not painful at all, just got red over the area I had radiation back in 2007. I haven't heard of people having a "rebound" of chemo symptoms. Am I just being dense here? Has anyone else?
I, who have weighed myself all but a handful of days, updated a spreadsheet with the monthly average, and then summarized it by year for EIGHT YEARS (how do you spell "compulsive"?), am now having dessert every night. A big one, too. Oh, and by the way, with all my tracking, I've gain 5 pounds since I started this.
xoxoxooxo and enjoy your view, your day, and your treats!!!
Calico
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Calico you are hilarious! I never thought about a spreadsheet though I'm sure it would help keeping track of everything. Btw - I have the runny nose too (on gemzar/carboplatin). I thought it was my sinus. Seems that many people have it as a side effect though.
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Hi, SyrMom and all, I'm soooooooooo discouraged. It's been 6 weeks since my 2nd Doxil. I went through a bout of hand swelling, burning, skin splitting and peeling, and all the onc could offer was Triamcinolone Acetonide cream that has the consistency of Vaseline, and something called "Jeans Cream", which is very expensive and no better than any garden-variety hand cream. I thought I was through the worst of it, and was on the mend, but the hands are now burning as much as they ever did, and I'm afraid I'm going to have a "Phase II" of more swelling, burning, peeling, etc. I called the onc nurses AGAIN today, and they talked AGAIN about moisturizing, and said to talk to the onc when I see him on Monday, which I certainly will. In other words, they haven't a clue, or else they ain't gonna be the ones to deliver the news.
I can at least say that the onc agreed when I saw him 2 weeks ago that I shouldn't have any more Doxil (right!), told me to get a CT (which I did this morning), and we'd go over that on Monday and decide what to do. Since Doxil did me no good and my tumor marker is now over 1,000, I hate to think what more he has up his never-ending, but always toxic, sleeve.
So, SyrMom, can you relate to this "Phase II" at all, or am I venturing into uncharted waters?
THANK YOU FOR BEING HERE!!!!!!!!
xoxoxoxoox!!!
Calico
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SyrMom, sorry, I just noticed your PM from earlier this month and have replied.
xoxoxoox
Calico
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Calico ... I hear you! This was my second experience with hand/foot, first on Xeloda, but not nearly as bad as doxil. Again, from what I understand that's because the doxil hangs out in the fat cells. So, yes, it may be "out of your system" technically, but takes a while for the fat cells to empty out. I don't know all the physiological ins and outs, but makes sense.
Some of the things I learned for handling hand/foot on the Xeloda boards was as follows: palms & soles of feet protect from heat, like hot water (I wore rubber sandals in the shower so the soles of my feet weren't in direct contact with the hot water & rubber gloves when hands in water). Also, to try and protect hands/feet from any friction - I find that very difficult when one must walk!! However, I was careful about what I put on my feet. With the hands, even opening a jar or whatever, I had a barrier between my skin & the object. From my understanding, friction can set the whole process off - heard this from a pharmacist! There were times I also put my feet either in cool water or on cool packs, just to calm down the inflammation.
Lotioning never prevented this condition for me, but would have been far worse if I hadn't kept the skin as soft as possible; do not allow your skin to get hard, if possible. So lotion as much as you are able. I found aquaphor to be the most healing, but it's greasy which I hate, so I'd put on at night with soft socks and cotton gloves (cotton gloves I found at Sally's Beauty & Bed, Bath Beyond Stores) - if my feet were too hot, I would use old sock & cut the top of the toes out! Little breathier! I also used Gold Bond softening for feet during day, Gold Bond hand, Eucerin & anything that didn't have a lot of perfume etc., but hypoallergic. My cuticles also took a big hit, so I got some cuticle oil from Sally's, love the stuff! Gentle oil that helps to hydrate. There are a ton of other products other ladies shared that worked for them, like Bag Balm, etc. I tried a host of stuff, have a house full of lotions and products, but the few I mentioned here are what helped me the most. We all have different skin types & mine has always been sensitive skin, so I have to be careful not to cause more irritation .
Personally, I think this hand/foot side effect is like being pregnant - you either are or aren't - going to experience it! In my case, I shutter every time I read it as a possible side effect, cause, for whatever reason, my system "gets" it. So while Xeloda & Doxil are excellent chemos for many of us and I have read many women have had years on Xeloda and remained stable, I was crushed when I couldn't tolerate it and it did nothing positive for my cancer - same with doxil. However, better to know as soon as possible & move on. Like you & many others, Calico, as my options run out I get freaked - however, hopefully there will continue to be more in the pipeline. So far I'm tolerating Halaven well, except for severe back spasms that are not being blamed on the Halaven, but I'm suspicious. I will somehow deal with it cause the liver has shown a response! As I've shared on the other boards, I have known spinal mets throughout, as well as ribs, pelvis, femurs, etc., etc. Had CT chest pelvis, MRI whole spine, bone scan all in past week - so far no reasonable explanation to new, severe onset of back pain, & tetany like spasms other areas of my body, but I will find a way cause if the Halaven is having an effect I don't want to give it up!!
So, hang in there ... I feel your skin will heal, it will just take some time and be sensitive for a while.
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One last thought, try & stay hydrated as much as possible to help to flush out your system - I'm not a huge drinker, but try to take sips of water all day.
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THANK YOU, SYRMOM!!!!!!! I had not counted on the Doxil being worse than the Xeloda for hand/foot junk. Didn't think that was possible! Ha! I'm such an idiot to have expectations in this business!
It's weird and unfortunate that the best products seem to be greasy, but I guess the greasiness provides the best moisture retainer for the skin, and stays on the longest. I will say that he Triamcinolone Acetonide cream, while greasy, doesn't seem to stain clothes.
I will be super extra-vigilant to not put my hands in hot water and not to submit them to any friction, i.e. handle everything very lightly. I am soooooooooo grateful I can still type!!!!!!!
Get this: I have a dear friend who is convinced if I just used her hot wax machine on my hands, they'd feel much better. I've told her heat makes it worse, but that does not seem to compute for her. I'll have her call you if she won't let up!
I think my next stop might be Halaven, too, and will be on the lookout for back spasms. Did you ever find anything effective for the pain? I also have mets in spine and liver.
I can't thank you enough for all your advice!!!
xoxoxoxox!!!!
Calico
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Calico ... oh, my, keep your hands away from that hot wax, dang!! ouch!
We're all in this together & learn from each other. If it weren't for the other women sharing on the other boards, I wouldn't of had a clue how to approach this & as I learn new things I try and pass them on as well. When I'm down & out I tend to shut down and just lurk on the boards, but it still helps me. Until recently, I had been doing more lurking since August when taxol failed me - I had gotten an 11 mo run out of it and was so put out right before my daughter's wedding to have it fail. Then 2 more chemos failed after that. So now the liver is finally responding to something, I feel as if I'm coming out of my funk a bit and better able to share. I'd rather share, it's just I get so apathetic when treatment fails.
As far as the back pain goes I now have to have a RO consult cause the bone scan showed more extensive mets in the rib areas - so will see. I would prefer to see what the Halaven can do first & find a way to control the pain while waiting. I have bone mets everywhere - whole spine, hips, femurs, ribs, humerous & pelvis. I also have 2 kinds of back pain - the kind that came on suddenly at first as a spasm and has caused me great anguish for 4 weeks (better now, but not gone) & concern for fracture (no fracture thank goodness) and then I have these tetany like spasms that I get anywhere in my body - hands, jaw, whatever - comes in real fast and debilitating & then goes away. But they are strong and forceful. I'm sure the second group has to be chemo related & am not sure about the spasm/pain group that lingers. Could be the mets, but then again I'm wondering with the affect chemo has on tissue/muscles, etc. what the impact is. Just don't know. I'm just so grateful for no fracture as it wouldn't take much more than a flea to cause that!
Hang in there!
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Hey, Tammy, you there? I wanted to thank you! Your advice about Miralax, combined with 10 prunes and 6 ozs of warm prune juice a day have turned the trick! I'm going to phase off of the prune juice and prunes slowly and see if the Miralax alone will do the job. Sennekot was causing more trouble than it was fixing. What's great, too, is Miralax has no funky taste or consistency. I mix it with my first cup of coffee and don't even know it's there.
Thanks again!
Calico
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SyrMom- just thinking the tetany type symptoms could be caused by a calcium blood level that is very low. Be sure to mention it when you go for chemo, as seizures can sometimes also occur. If your bones are trying to pull calcium from your blood to strengthen them then in turn may be lowering your blood calcium levels. Just a thought from this retired nurse.
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Thanks, Gammy. Yes, my calcium & Mag are checked weekly during chemo & are at "normal levels." Weird stuff, for sure.
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Becca57,
Thanks for the encouraging post! I just got diagnosed 6 months ago, and to hear you've been stage 4 for 14 years, makes me hopeful that I can have a future! Thanks so much!
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SyrMom...maybe a silly question...you'd said you'd rather not have radiation to keep your counts up for strength during chemo. Do rads hammer WBC? I had brachytherapy so had few ses w/rads (other than it probably failed as recurrence in same spot)...so just wondering.
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My understanding is the red more than white blood cells take the hit ... with radiation, causes the bone marrow suppression. So where I have treatment, if a pt is getting chemo and needs radiation, chemo is usually temporarily stopped & resumed after radiation done. However, today, I learned there's another radiation, something called like "ion," (the chemo brain could have the name wrong) which doesn't hit the bone marrow as hard (can be used in rib areas) - however, it's limited and the pt has to be small in stature to benefit from it, larger builds do not qualify/benefit. It can be snuck in on the chemo week off, 5 days, 5 min. Because I'm running anemic all the time, I want to wait for now as long as I can function in my present state. However, it remains an option for me.
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Hello, I am getting my first infusion of Abraxane tomorrow after 17 months on Xeloda. Anyone else on Abraxane? I will be getting infusion every 3 weeks.
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Congrats, Hansaim! I only got about 7 months on Xeloda.
I was on Abraxane, but after about 6 months, between the hand/foot neuropathy and fatigue, I threw the towel in. There are many who get much more out of it, and everybody's different, so that is just my experience. Also, I was getting it every week.
Seeing you having great success with Abraxane!
xoxoxoxxox
Calico
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Hi, all, I'm happy to report that I'm only taking Miralax now for constipation (no prunes or prune juice), and it's working great! Wish I'd tried this earlier.
My hand/foot issues from 2 Doxil treatments are still the same and I have to keep babying my hands (no hot water or friction, lots of lotion).
The neuropathy (numbness and tingling) is improving everywhere except my left hand/arm which has almost no feeling at all. I can't feel to put on my earrings, and typing's a bit of a challenge. The onc wants me to have had 6 Havalen treatments and then will do a PET, so that works out to be in about 6 weeks. Can anyone else relate to this isolated numbness/tinglling?
xoxoxoxooxo!!!
Calico
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Calico...Miralax was a godsend for our grandson who couldn't poop as a baby...and my onc suggested it for me, if needed, but prunes are my preferred method
. So happy you have relief! I have numbness/tingling in fingers & toes. It really is fickle, worse at times, hard to pin it down. I had a broken R elbow & the swelling caused such swelling that 4 mos after the elbow surgery, I had carpal tunnel surgery, which had to be done before diep surgery 3 mos later. Hence..I have worse neuropathy on that side. Did you have any type trauma to the L side? Maybe lymphs removed? Mine improved after I got a chemo break, but I think perjeta is aggravating it. I know SyrMom is having success w/LGlutamine. I have a bit of trouble w/fine motor skills too...I just take it slow. My nails are a mess too...peeling, so I don't change earrings often. Hope you find relief...never a dull moment.0 -
Hi, RonnieKay, soooooooo sorry you've been through so much with the broken elbow! What a travail!
I'm afraid the left arm/hand numbness/fine motor issues are likely the arthritis in my neck at C3-C4. When I told my onc I couldn't see myself having a second neck fusion at this point (C5-6/C6-7 were fused years ago), he said "That's not going to happen." Just another "as we get older" and/or "as we get chemo" story.
Thanks for reminding me about the L-Glutamine.
xoxoxoxoxoxxo
Calico
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Oh crumb ...I remember you had the fusions done....seriously would scare the wits outta me! The age thing...sometimes it makes me crazy because I felt very young before bc. My onc said she really thinks my immune system gave out when I went thru all my surgeries...that cells were prob lying dormant & may have for a long time, but weakened, couldn't keep them down. And it's so true...chemo takes a toll on any weakness. So we stay strong through it all!
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CalicoCat- Yep I have neuropathy in both feet but only one hand.The BC side, where several lymph nodes were removed. Weird thing is the feet came on after Taxol. Never went away since 2006.The hand came on as I developed a new node under the right collar bone which got zapped w/6 weeks of RADS.Picking up anything small is quite a chore. I too wear the same earings all the time. I am often calling gravity as my enemy all the time. I the afterlife I look forward to having NO gravity- ha - My nails are shot to glory right now but am determined to . keep doing my quilting
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Hi, RonnieKay and Grammy, thanks for writing. You may have seen my post on another thread that now the onc wants me to have a brain MRI to rule out brain mets as being the cause of the neuropathy/weakness in the left arm/hand. Things sure get complicated when cancer and its treatment get into the picture since so many possibilities have to be considered. I will say, though, that even years ago (pre-BC), when I had this problem bilaterally, had the fusion, and my symptoms still weren't improving, the neurologist had me get a brain MRI to rule out Multiple Sclerosis. I was negative for that, thank heavens but I was glad he was being thorough in trying to determine why I wasn't getting better.
I never realized how the ability to feel fine sensations allowed us to do things like button buttons and pick up small things. I can be looking straight at the button and the button hole and still not be able to do it. Maddening!
You keep on knitting, Granny! You go girl!!!
xoxxoxoxooo
Calico
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