peritoneal carcinomatosis
Comments
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Dianarose, I think the average on Navelbine is 14 treatments. I've never heard it came in a pill form. Glad today is better for you. Cathy
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Cathy-did it require a port? I would rather do pill form then get a port.
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Hi Dianarose, I only found one article in my search about Navelbine taken orally so I must assume that for the most part it is given by i.v. I have had my port for 3 years now and haven't had much trouble with it. You will probably need one eventually anyway. Take care. Cathy
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Dianarose- I have had my port since 2012. It's a power port and I love it! All the lab draws and meds go right in! I highly recommend it. My onc never mentioned giving Navelbine in pill form. I drive an hour each way and I am sure she would have mentioned it. My hair is growing back from the Taxol. So Navelbine doesn't effect hair growth. Just 2 more days and you get to meet your new oncologist and get started on your new treatment. I am excited for you. Things will get better. Fortitude.
Hummingbird- how are you doing on your treatment? Are treatments working?
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Dianarose, I just wanted to send you a hug. It's nearly Wednesday and then you have the appointment with the medical oncologist who I am sure will put you on the right treatment plan to bring you some relief from the awful symptoms you are experiencing. Perhaps making a list of questions or discussion points would help calm your nerves? I think taking action in some way shape or form helps.
Wishing you all the best for tomorrow - let us know how you get on, cheers Judy x
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http://www.mydr.com.au/medicines/cmis/S
Link for the oral Navelbine. Maybe I am skeptical of oncologist but they can't make money off from giving you a prescription but can off infusion
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Hi DianaRose,
Continued well wishes that you feel as well as possible each day and that your appointment on Wednesday gives you a good direction to help you heal.
I've had a port-a-cath for weekly IV infusions since April 2002. It's still working, though blood return isn't so good now.
Sure a relief not to have to get poked for infusions or blood draws!
Here's a good bco post about ports with lots of photographs
https://community.breastcancer.org/forum/8/topics/...
DianaRose, I hope it empowers you to speak with whoever installs your port to get the type and placement of the port that works for YOU!
It may seem this is about fighting cancer, but ultimately, it's about our health and well-being.
warmest healing wishes, Stephanie
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Stephanie- do they knock you completely out for a port. Just the thought of anesthesia and the OR again freaks me out. I have a tube in my back and a bag attached to my leg. One more thing is pushing me over the edge
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Diannarose- it's day surgery for a port. Yes they knock you out but it's a short time. Then you get to use the port for years and no searching for veins and getting stuck. It really is worth the effort. I hope you feel better soon.
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The stomach pain is wearing me down. What did any of you do for the pain?
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Hi DianaRose,
I had my port-a-cath installed as an out-patient procedure using only local anesthesia (lidocaine shot), no happy juice.
These days these procdures are done by interventional radiologists (IR) who are physicians with the toys for seeing what they're doing - ultrasound, x-rays, etc.
An IR inserted my indwelling drain in August 2015. They offered to put me out, but I opted for local plus a tiny bit of happy juice, so I could watch it on the screen.
Am glad I was conscious for both procedures, but I'm kinda tough, having had many small tumors removed from skin and chest wall using only local anesthesia.
I'd say it's up to you and what you can tolerate, but be sure to have the conversation before undergoing any treatment or procedure.
warmest healing wishes, DianaRose, Stephanie
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Stephanie- when they cut into your back to put in a naphostomy tube in your kidney they just numb it and give you a bit of happy juice. It was fine. Wish I knew they were waxing my back before they ripped the strip off😖 It was an interventional radiologist who did it. I think it was fairly quick. Don't remember too much
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Hi everyone,
I can't get my head around how our ranks have grown. Too many good people in this crappy club. At least we can share experiences and perhaps help each other that way. I wish I could wave a magic wand and have it all go away for all of us. Barring that, I can cry and moan to my belly buddies, and know that they'll understand!Dianarose, what finally got the pain under control when I had a partial blockage of the small intestine was a combination of reglan (I swear by it!), a fentanyl patch (don't know if this really did anything, but wasn't willing to give it up), Prilosec (for the acid reflux) AND as-needed dilaudid (hydropmorphone). When I was in the hospital, I'd start getting gas pains at around 5AM every day. If I tried to ignore them, they became more and more painful until I finally had to have something. Eventually, I recognized those pains for the beginnings of misery, and just asked for the dilaudid right away. When I was discharged, they gave me dilaudid pills, and if I feel those particular kinds of pains, I just take a pill. I needed them for the first few days at home, just one a day, and then, for whatever reason, I stopped having those pains and haven't taken a dilaudid for over two months. My oncologist wanted me to continue with the fentanyl patch, but I'm discontinuing that, too. I'm afraid to stop the reglan, on the other hand - that's what keeps things moving through my system. Until I know that the blockage is completely gone, I think I'll continue with reglan.
They sent me home from the hospital on TPN and a clear liquid diet. I quickly moved to full liquids. My friends rallied around and brought me soups - zucchini soup, cucumber soup, carrot soup, the broth from hot and sour soup, home-made chicken broth. I made my own soup with things from my garden - tomatoes, beans, dill, thyme, basil, and also onions, celery, and carrots. I didn't puree the soup, but I strained it. Man, was it good, but it killed me not to be able to eat those vegetables!
I understand what you mean about having one more thing unnatural thing attached. Getting the port-a-cath seemed like an admission of sickness, and then the pleurX catheter to drain the ascites seemed like adding insult to injury. THEN they put in a double-lumen PICC line for the TPN, so now I have 4 lines hanging off me. However, using the pleurX is better than having paracentesis once a week and the power port was great while I was being "desensitized" to taxol, and the PICC has been great since I've been home - it's like having an always-accessed port: no needles ever. They draw blood and give me chemo in one lumen, and the other lumen is used exclusively for the TPN. When I come off TPN, I suppose they'll remove it. I'll be sorry to see it go.
BTW, my port was installed with just a local anesthetic. I was awake but couldn't really see anything. The radiologist was wonderful at letting me know what was happening every step of the way. It was a strangely pleasant experience.
Good luck tomorrow!
Sheri, Stacy, Judy - happy to meet you all - wish it was under VERY different circumstances
Stephanie, thanks for all the details of how you're managing your life. I don't know how to say this gracefully, but I find it very comforting, somehow - makes me feel like perhaps I can handle things, too.
Rosevalley, Hummingbord, Cathy - wishing you success in your treatments
OY - whom have I forgotten? please forgive...
Comfort and healing to all,,
-Erica
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My neighborhood yesterday. Love this time of the year 0 -
HI ladies, Haven't really posted but have been lurking and reading everything. Since surgery the 29th my stomach symptoms are 98% better, I'm assuming because my gallbladder was so screwed up....but I know the fun hasn't started yet. I See the oncologist Thursday. Will then have final path report and talk treatment options. I'm sure I will have a gazillion questions!!
Be well,
Stacy
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New oncologist this morning. Barely slept between tummy pain and not being able to shut my head off. Still can't wrap my head around all this and how quick it all seemed to happen. Has anyone with tummy Mets ever get back to NED. I know, dumb question. Have a great day ladies
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Hi DianaRose,
My heart has been aching for you since we first met.
You've already had such a tough time; are one of the few bco members I know of with a nephrostomy (Diana50 did too); you are in and out of hospital and frequent life-threatening situations; are facing a new oncologist and new treatment plan that you hope will get you to NED!
Then we, your belly mets sisters, both understand you and terrify you - if bad things can happen to others, might they happen to you too? Do anyone of us wake up from cancer's evil spell and get totally well again?
DianaRose, I hope you will be able to slow down and be very, very kind to the part of you that is so scared. If you can keep some of your wits together, you may be better able to face whatever challenges occur, whether or not they're what you want.
And I hope that you'll stick with us, because though those who write don't have the same set of challenges that you do, we have first-hand experience that may help you, we can support and love you and we have all been terrified too.
We all practice loving kindness to the best of our ability. I hope you will find it for yourself too.
May you be safe, may you be happy, may you be healthy, may you be at ease.
Good morning to all my belly mets sisters. I'm up early with nausea...many of you know just what I mean. So glad I can eat and the food flows through me.
much love always, Stephanie
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I like the new oncologist. She seems to be on top of things and spent over two hours with us. My choices of chemo are paclitaxel or Doxorubicin. I think I am going to go with the first one. All the heart issues with the second one are scary. She did put me back on Reglan 👍. She said most likely with the cancer coating the intestine that I am not getting much food and nutrition absorption. She did blood work including the tumor marker. Will be having a port pu in . They are having a tumor board meeting on Tuesday and her plan is to start chemo next Thursday. I am exhausted 😖. I feel like life is over as I knew it. Have had no love life in many months. Feel bad for my husband but he never complains. Wig shopping on Friday. I wood just like to be normal for a day. Hubby said I never was lo
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Just got my tumor marker results and it is 175. Was around 82 in June 😖
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Diana rose my tumor markers are over a 1000. I know this is miserable and life as you knew it is over. This is a new life and there is still life in it. It just looks and feels crummy right now. Hugs and fortitude for you as you transition into active cancer care.
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Dianarose - so pleased you now have a treatment plan overseen by an oncologist you like and have confidence in. I think moving forward is much easier when you know the road ahead. All the best with getting the port put in and with the new chemo. If I have to have chemo again I will also need a port as the only veins that now work are two small ones on the back of my right hand.
Stephanie thanks for the link to the A/A thread . I posted a message acknowledging you on there. You are one very amazing lady!
I just want to put it out there that mouth ulcers are miserable! I am using a dexamethasone mouth wash and yesterday my dentist prescribed me an expensive bottle of Xylocaine. But the total temporary numbness in your mouth is so worth the money!
I didn't think hormone therapy would make you tired , but my oh my. I was falling asleep at work yesterday and when I got home I just crawled fully clothed into bed and had a 2 hour nap!
I had a bone scan and the good news I'm taking away from it is that they didn't definitively say it was bone mets. I have sclerotic lesions on the T11 and T12 but the report said 'no abnormal osteoblastic activity is demonstrated to accompany sclerotic abnormalities in the iliac bones posterioly, T11 and subtly in T12 and L3. Is the patient on hormonal therapy which may suppress the activity of bone metastases?' - that sounds like good news right?
I'm flying to Melbourne to see my kids this weekend, so looking forward to that. They are 25, 23 and 20.
Wishing everyone healing thoughts and hope you all have a good weekend
Love Judy xxxx
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Rosevalley- sorry you markers are so high😓.
I am nervous about side effects from Taxol. I did ok with CMF and even gained weight during chemo.
Judy- I started Letrolzole 3 weeks ago and I am always tired.
Having the port put in on Monday also changing the naphostomy tube at the same time. Chemo is on Wednesday which happens to be my 12 year cancerversary
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I hope Hummingbird chimes in and tells you about her experiences with Taxol. She had a nice run with it and did pretty well if I recall correctly. I did well with one dose and it dropped my markers like a rock. Unfortunately I developed a reaction otherwise I would take it.
You are no doubt tired from being unable to eat and absorb food. Hopefully once you get your port and chemo things will improve! Pulling for you. You have been through so much.
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My quick update on my belly mets: Today I thought that an indwelling drain for ascites is preferable to letting them build up or using a new needle for each draining (infection, puncture, etc.).
I also figured out this morning that since August 2015, I lose 2/3 of my body weight every month (1 liter daily x 30 days = 66# when my weight is now <100#)). Also lose substantial amounts of nutrients including fluids, blood, electrolytes, protein and more. This morning, 10 minutes after draining, my blood pressure dropped from 98/58 to 82/52 and just kept dropping as I fell asleep saying, "I'm so tired, I'm so drained".
The mets in my belly are palpable and my liver reaches my pubic bone (it's usually tucked in above ribs).
As of next January, I will have had confirmed liver mets for 3 years and ascites for 2 years.
Keeping alive with belly mets is really challenging and still worth it!
This may be a path, but it's not been an easy one to for me to walk.
So grateful to be here. So grateful for those walking with me, including our exclusive group here at bco.
And always glad to hear that our members are doing well on chemo and treatment!
thank you and healing regards, Stephanie
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Stephanie, I want to be like you when I grow up! The worst thing that happened to me today was to get my head shaved down to a crewcut. I am losing my hair like crazy. The final straw was going to put away my clean dishes out of the drainer and they were covered with my hair!!!!!! YUCK!!!!!!!! Normally with Halaven your hair just thins. I figure this treatment must really be kicking the cancer back because of the way I am reacting to it. I have bad days from the chemo but I think my mets are better already. I'm not throwing up now. 3rd treatment today! Still putting along. Dianarose, so glad you are getting the help you need. Hang in there. LOVE and HUGS to you all. Storms coming in over the next few days. If you don' t hear from me, you will know we probably lost power. Cathy
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You ladies are so encouraging ❤️️ So glad I found you. I think part of my not feeling well is this ongoing kidney infection. Hopefully changing the tube out Monday will help. I still have to see a gynecologist oncologist to have the lumps in my vaginal area biopsied. So many doctors and appointments. I think my body has adjusted to not eating much. I actually don't look forward to eating as my tummy hurts after. We were going to California for Christmas to be with some of our kids but looks like we are stuck in Maine now. Not a fan of snow and cold. Between us we have ten kids from Maine to California so they are going to have to come here now🤗. What's great is two of them can fly free if there is a military plane coming to NH.
About this whole port thing, how long to put it in and does it hurt once it's in?
Have a blessed day 🙏 Dian
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Time to kiss my hair goodbye again 😢0 -
I get irritated by comments from people who have not gone through this. It's very personal and emotional. I have a friend who didn't have to have chemo, just radiation. She's the one with the most stupid comments. She even said , well radiation is far worse then chemo, really. How the hell does she know. One lady even asked if it hurt when they cut my breasts off. I have learned to shake my head and walk away
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Dianarose and Cathy, Yes - the hair loss is so tough! I had really long hair too. But - what can we do? Just another thing that we have to accept to continue on. I finally have a covered scalp again, but found out yesterday that I will be put on yet another chemo on Tuesday. So - most likely will be bald again soon!
I've had a very crazy, weird week. On Monday I had a CT scan during which - right after the contrast injection - my heart went really off and was beating wildly and very fast. Lots of fluttering. My pressure was very high too. I was kept a while and an EKG was done and when the pulse rate began to go down, I was sent home. But my pulse and pressure were high for about 12 hours! Then the next day I got a call that I need to see a cardiologist, and I made an appointment. Just an hour after that, I got another call that my CT scan showed a possible blood clot in my right iliac vein and I needed to go in the next day for an MRI. So I did that. Finally, yesterday I had my scheduled labs and tests and onc appointment for the clinical trial I have been on. Well, unfortunately, the drug combo did not work and I have had progression - new multiple liver mets and increased size of existing ones plus increased belly ascites. No blood clot, though. So needless to say, to hear of this progression only 7 weeks since my last scan and after being so hopeful about this trial - was pretty disappointing and deflating. Lots of time and effort went into that. But, again, I just have to continue on with another chemo to hopefully knock things back. My liver is taking a hit and liver numbers are of concern. But for now I'm feeling great, even with the big belly, and so I'll enjoy this until chemo gets me again!!
Dianarose, I really feel for you. You have a lot going on. I'm pretty sure that you will LOVE having a port! I say how much better things are that I had one put in in March all the time. And I wanted to tell you that I never thought I would actually like a chemo, but I loved Taxol!! Not only did Taxol take me from being so horribly sick with the belly stuff to feeling good again, but I found it to be very doable. Good luck with it and I hope you get the same great success. It did take about 5 weeks, though, for me to begin to feel an improvement - so hang in there!
Judy, I had fatigue on the A/A combo and I don't mean to scare you - but if you get short of breath, tell your onc right away. Those drugs can be tough on the lungs.
Stephanie, I was very heartbroken to read your post last night. You have dealt with this for so long and I just want to tell you that part of my being strong through my issues has come from learning from you! You are a wonderful, amazing lady!
Rosevalley, I'm so very happy that you are having success with your treatment! I feel much better when I hear that!
To all, best wishes and I hope you are comfortable and able to enjoy the day!
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Hummingbird, I'm assimilating news from your trial, plus your crazy, weird week. I so wish things were going differently for you and recognize your strength in dealing with what is.
DianaRose, your beautiful hair! Thank you for showing us one more thing you are losing. This time of giving up and letting go is so hard. We might not understand exactly what you're feeling or going through, but we've all been through some version of losing what we identify with and love!
Heading back to bed after an early morning wake-up call to take zofran and drink pro-biotic sauerkraut juice. Both help with the nausea and ease me back to sleep.
Loving you all in my sweet dreams, Stephanie
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