Bone Mets Thread
Comments
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Wendy- there is a nausea shot called Sustol that I got. Lasts for seven days. Worked wonders for me. The shot part is brutal though but was worth it
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Wendy - No experience with taxol, but I am glad that you have the ideal life coach at hand. Dogs like walks followed by long luxurious naps. The doggy lifestyle sounds like just the ticket to get through this.
>Z<
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I have mets in my spine and never had pain until this week. Hurts to sit up right. Feels better if I lean over. Probably not a good sign
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Happy Easter, everyone. I was in too much pain to colors eggs yesterday, so DH and DD stepped in. Blessings to you all.
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Wendi, I see that Micmel hit on almost everything I was going to say, exactly! So I'm mostly just responding to say "yeah, what she said."
I had a response like you describe to my first couple of infusions, and after that we halved my steroid dose from 10mg to 5mg, and since then I have not had that hard crash on day 3. I also take Claritin without fail, and I am convinced it makes a big difference. My premed drips include something like pepsin or prilosec, and Benadryl. I asked my chemo nurse if it is okay for me to take a Claritin the night before getting the Benadryl drip in the morning, and she said absolutely yes.
I am getting into a rhythm with it, which means I will add NOTHING to my calendar for days 3 & 4 if I can help it. All I plan for those days is to read, listen to uplifting music, take short walks and extra showers, nap a little and catch up on email. Maybe fold a load of towels. Dinner is takeout on Day 3.
Hydration also makes a huge difference in how I respond. If I guzzle water the day before, the day of, and the day after, I do much better. I get a little burn in my bladder afterward if I don't. I have taken to filling my Yeti 3/4 full with water, then topping it off with unsweetened cranberry juice and lemon. I also swear by taking a wheatgrass juice shot early afternoon. I keep a stash in the freezer at all times.
Probiotics help a lot, too.
Like Mic said, you will feel better after the hair shedding is past. My scalp also hurt like crazy for a week or so-- I had to take a pain pill just to put my head on a pillow there for a couple of nights. As for sleeping caps, you'll find that many advertised as chemo caps (like on Amazon) are made from two layers of cotton (sometimes they are described as two-ply). For me, those are too hot to wear overnight. I only found one-ply caps in wig shops. Much more comfortable, I think.
Hang in there. Sorry you're having a rough go of it, but I think it will get better.
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Wow, lulubee, good info to have as I eventually move on to tougher chemos. Incidentally, I do much the same thing with zometa bone infusions, and sometimes I'll still have a bit of diarrhea on days 3 and 4, but it's better if I drink lots of water.
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Thanks Lulubee I will heed all your advice this go around . Thank you to you too Micmel and Z and everyone else Dianarose all of you are very appreciated. I don't think now I can do 18 rounds of this I will disappear. Good luck to everyone getting new treatment and scans .
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Wendy ~ I had nine abraxane after four cytoxin. I am not going to lie and say it was easy, it really wasn't and I hated every second. But it really did shrink some SH*T! So in the end it was worth it. Personally, 18 seems like crazy town! After nine I couldn't feel my feet and my toe nails turned brown and almost fell off and finger tips lost all fine motor skills. The last chemo I had was October 2016,I am just now starting to feel my feet again and am able to run and walk without too much pain. Over the entire time of the heavy chemo I had people telling me it would get better with time and it has. It really does take time. I pray you have an easier time than I did. Im keeping you close in prayer. I agree with lulebee about the sleep caps only being cotton only one layer! The hot flashes are pretty brutal! I took it one day at a time Wendy. One treatment at a time. That's all we can do. Stay strong. ~M~
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Micmel- do the toe nails get better? Mine are raised and a nasty brown. I also got a blistering rash on my feet. I have been using a steroid ointment MO prescribed but not going away.
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Dianarose~ I bought a foot bath for my feet and used it, it did help. The toe nails have to grow out and that takes longer than the fingernails. I would bathe my feet before I put the ointment on it. To make sure its super clean and free of infection, I also used aveno moisture fill lotion after! I was always rubbing lotion on my feet because they would crack on my heel. You've been through the ringer darling. You deserve a break!! Prayers for all 💐 ~M~
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so number two today I have been giving how badly I feel a lot of thought lately and it seems I'm doing worse than a lot of other people on Taxol. I'm thinking it may not be the Taxol that is giving me this grief that it is actually the cancer that I'm feeling. Which is very frightening, hopefully hitting it again today will make things better. Talked to a naturepath yesterday and he recommended the ketoginetic diet . Also fasting day of chemo is supposed to help idk I'm trying it. And lulubee drinking lots of water so hard going into this already nauseous. Wish me luck ladies not feeling it today..
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Wendy, so sorry you are feeling so bad! Hope you feel better soon and this treatment kicks cancers ass
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Good Luck Wendy! With you in spirit.
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Hang tough Wendy! You can do this! One single day at a time. Do talk to the nurse about symptom control though. Prayers and hugs
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Wendy,
I'm not sure this will help with all of your chemo issues- but I used to get extra saline drips the day after chemo. I just could not drink enough water and got so extremely fatigued. I still has to rest a LOT, but the extra fluids certainly helped.
Hugs!
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Hang in there Wendy! You've got this! We're all here for you. ((Hugs))
Cathy
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Wendy...we are all pulling for you to begin getting better and feeling better ASAP. Lots of good advice here from women who have been through it. Cancer seems to act up when treatments are hitting it, but I know that doesn't help you feel better right now. Sending good mojo your way.
Warmest wishes,
Kathryn
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Wendy, There are many things other than the cancer itself that could be contributing to the way you feel. It could very well be the Taxol. Everyone is unique, and each person's body reacts differently to treatments, including Taxol. You might not react the same way as others. If what your feeling is from the chemo, it doesn't necessarily mean that you will continue to feel that way. Your body could adjust to the chemo or your MO might be able to lower the dose. What you are feeling could also be from the treatment fighting the cancer, or it is possible that your lack of nutrition due to poor appetite and under-hydration due to nausea are contributing to the symptoms you are experiencing. Are you sleeping okay? Lack of sleep could have an impact. Stress and anxiety, which I am sure you have (as would anyone under the circumstances, can also play a role. Whatever the source of your symptoms, please let your medical team know what you are feeling. They might be able to make some adjustments to your treatment routine or offer some other assistance or advice. I know it is hard to be positive when you feel so bad, so we are here to hold you up
Hugs and prayers from, Lynne
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Wendy~ I can promise you fasting is not a good idea. Your body is already struggling to process the chemicals. You need to eat during the treatment. Like biting something and chewing while your medicine is dropping into your arm eating. If you do not eat. The symptoms will be double, that also goes along with fluids. I believe it is the taxol.also ask the nurses to slow down your drip. It might take longer but it's easier on the body. I went through exactly what you're describing and those things helped! some people just can't take taxol. I was one of them and I am wondering if you're having issues with the the steroids. They are tough. Ask your onc about abraxane. I didn't have to have steroids and it made a world of difference. I have never heard of the suggestion of fasting when you're body is already stressed from them chemo and toxins. The last thing you want is for your body to go into shock with no nutrients, if you have no food ,you will have no strength. My oncologist and every nurse I have ever had has always said eat eat eat ! There is no way your body can fight a cold without nutrients,no less attempt to deal with invading cancer cells! Please just try to eat with the drip. Your diet of course could be looked at more if you'd like. But fasting to me seems like putting yourself through unnecessary pain and or suffering and I would never want that for you! I am keeping you close in prayer and thought. You need to tweak the treatment to suit your side effects. It can be done. Eating small meals through the day will also help minimize the dizzying spells and nausea. Have they given you reglan? The anti nausea medication?? It really did help me tons! Bless you darling. Prayers your way. Hugs hugs hugs!
~M~
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Babs - The wedding was so beautiful (according to the photos.) Seeing your daughter happy is one of the best feelings ever. So glad you felt decent for the festivities, too! You look great:-) Now if the treatments will keep things stable for you there will be even more to celebrate.
Z - Take it easy! It seems like whenever a new ache/pain hits that is related to some activity, it does take a few days to recover. Because you've been so active, hoping the healing time is quick!!
Dianarose - That back pain sounds annoying...does your pain medication help you? I keep going back to my PT exercises because my spinal nerves are pinched by the sclerotic bone that has formed while healing. It never goes away, but doing those exercises has really helped. In the meantime, hoping you get some relief soon.
Lita - Love your new "Ride" and the hat made it look so festive. Hating what this disease is doing to our gang and how it makes our world smaller.
Loves Maltese - Thinking of you!
Patty - It's so nice to see your posts! Hope your new life helps reduce stress for you. I like being a single parent even with the challenges:-) Take care!
Chelle - Sending hugs to you...praying your husband has a full recovery and your new home turns out to be a place of healing for you both. There are a lot of creeps out there these days and for some reason they feel very proud of being awful. Crazy world...
Micmel, Lynnwood, MMATT, Linda and Gracie (plus others I've missed) Thanks for all your posts. It's always good to hear from everyone.
Scans in a few weeks and there are definitely wonky pains that I'm ignoring till then. I visited my daughter in Colorado Springs two weekends ago and it validated my wish to get out there. Found out about some good doctors at the University of Colorado system while I was there. Then, on Friday, I saw a job posting for a 3-6 month job there and applied. Flying out to interview tomorrow. My house goes on the market in a few days in a preplanned effort to downsize. Yikes...so much for reducing stress!!!
We will see what happens next...
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Kathryn, Wow, you sure do have a lot going on. That's a quick turnaround for scheduling a job interview. You must have qualifications that the employer finds quite attractive. Good luck. I hope the interview goes well and the job sounds attractive
Lynne
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Kathyrn - I am very interested in any information you have about doctors in Colorado Springs. My NM cancer treatment options are adequate only for early stage MBC where there is a map. I still don't know what to do if I get beyond the second line treatment options. I will be traveling to Colorado Springs myself in June for my DD1's soccer camp. Good luck with all these changes.
Wendy - I am impressed that you got your posterior to the naturopath with all the challenges you have going on. Nice work. I like the suggestions you got. I personally could not fast, but there are a number of studies that show it increases efficacy of chemo and reduces side effects. Fasting stimulates processes that are protective of normal cells,and stress cancer cells.
It is important to keep an open mind about what is causing you to feel like crap. I am wondering if it is not a bug. Didn't you have a fever BEFORE you started taxol? Given that you had a fever, I was surprised they moved the taxol treatment up rather than delay it. In the end, getting started was probably a good idea, but if you are also dealing with a flu at the same time, you are one tough cookie.
But we knew that.
It's impossible to keep your spirits up when you feel like crap. My hip is hurting due to a muscle strain from jumping on a trampoline, and that threw me into a weeping depression yesterday. I am not a weeper, it's not even cancer related. Everything is so loaded.
However, we'd all like a shot at lifting your spirits anyway. Please keep checking in. I am confident this will pass, but not completely until the taxol administration is done. Taxol is certainly a piece of the problem but necessary. Keep going. Hang with the naturopath.
>Z<
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Wendy,
I am sorry you are feeling so awful. I am praying the Taxol does a one two knock out on the cancer.
Gentle hugs and prayers,
Ronnie
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Wendy: 50s, Micmel and Z have given you some great advice.
Taxol reactions can be all over the map. As stated, everyone is different, and each has subsequent treatment is tolerated differently. As the drug information says either online or hard copies that the nurses give you, LET YOUR DR KNOW IF YOU ARE HAVING TROUBLE. They can adjust it. The extra saline drips do help, and slowing the infusion down.
I've heard pros and cons regarding fasting, too. If u r at or near target weight, I wouldn't recommend it. Especially if you're already LOSING WEIGHT. You still need to maintain muscle mass for strength and your day to day energy. I remember taking a 2 hour chemo class where they told us specifically what to do in terms of eating, hydrating, dealing with nausea, diarrhea, etc.
Yesterday I had a miserable day after Rx Tx. Dry heaves for hours. Couldn't leave the house. I made sure to take my pain meds b4 hitting the table, but probably took the Zofran for nausea a little too late. So Today I took the Zofran first b4 i even got out of bed and just skipped the damn pain meds. I slapped on a couple of Salon Pas extra strength patches (even tho they say only use one - oh well) after I got home, and DH is making me comfort pancakes b4 he goes to work.
Hopefully we'll both have a better day, Wendy.
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Kathryn, Dr hasn't cleared me 4 PT yet. She wants to see if the rads will work for my nerve pain. It helped last year, but that was in another area of the spine and the pain was different. This pain is pretty bad...it gets to the point where I can't even walk, and that pisses me off cuz we just renewed our membership to the East Bay regional parks district, and now I'm in too much pain to hike 😝 the hills.
Have u tried acupuncture yet? I've heard it can help, but Dr wants me 2 wait until rads are over, sigh.
Massage helps some.
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Wendy- my cancer center gave popsicles during infusions to help prevent mouth sores. I never got one. Dry mouth was a big problem though. Praying you feel better
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Wendy please let the chemo nurses know how you're feeling and what you SEs are so they can suggest changes
Lita. Hope tomorrow is better. Sending hugs
Kathryn. Wow that's a lot at one time
So because my TMs went up a lot I had my scans moved up to last Friday. The results are mixed. Most areas are better but 2 spots in liver show increases and one spot on L1. I'm starting to have some neuropathy so MO is looking into changing my treatment. Again! She's waiting to see if there's a developmental chemo or an immunotherapy trial at MSKCc for me now. If not I move onto Gemzar. The good news is that my hair will grow back so I won't have to wear this hot wig in the summer! Bad news it's back to hair dying and cut expenses!!!! Only kidding! I welcome both. Just would like a treatment to work for an extended period of time!!! Oh well!!!
Babs
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Lita - thinking of you. you stay in very good humor, at least in our posts, despite the pain. You are very brave. A good attitude helps so much, but we all feel for what you are going through.
Babs - A trial would be an interesting option. If MSKCC doesn't have anything, consider contacting the NIH directly. Here is a link to the immunotherapy trial on the top of my list. If you contact the NIH about this trial, they will screen you for all the trials they have.
Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer
There are a number of services that can map out the path forward through clinical trials, etc. Life Trials is one of the more reasonably priced options.
That doesn't sound like much progression, so you have time. Although its frustrating to burn through treatments, the opportunity to move into some of these trials, now or after gemzar, is very hopeful. You do have to get going on research and building the relationship with the appropriate centers as this does take time.
>Z<
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Babs, DRAT! I was hoping that all your news would be good and that you would be able to stay in your current treatment plan (although if you have neuropathy, a new plan is not a bad idea anyway.) It seems like you have not lost your sense of humor, but how are you doing? How are you feeling? When will you hear your MO's recommendations for your test treatment plan?
Lita, I hope the rads help relieve your pain.
LindaE, Any word on your scan results? It is probably too soon, but I thought I would ask. Have your symptoms become any more or less severe?
Dianarose, How is your back pain, any better?
Lynne
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Lyne - Spoke to my nurse this morning and results are not in yet. I'm not any better and not any worse. I'm not a happy cancer with this slurred speech. It's bruising my dignity and trying to draw strength from you resilient ladies. Going for bone scan tomorrow. Thanks for checking on me.
Babs - That's not a bad scan in my opinion. Bugger on neuropathy though. Good luck on Gemzar.
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