Halaven - Day 1
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I think that is Very good news Donnabelle. Tomorrow I go get my bloodwork done and see the cancer care doctor; if all goes well we start my day 1 cycle 2.
I am definitely not thin lol but suffer from several complications from my bi-pedicled TRAM flap done two years ago, I have lumps, bumps and bulges all along the upper abdominal...but im curious about “how” it feels to you. Is it like a solid, hard lump or is it softish, is there any tenderness at all? Did you feel pain from the liver tumours at any point? My sensations are very exaggerated because of the surgeries and subsequent damage. I’m so hoping for pain relief on halaven I’m beginning to forget what normal feels like.
Jaylea - I had a port in 2013 but as soon as treatment ended in 2014 they removed it as of unexplained discomfort, which then immediately resolved. One nurse mentioned a picc once but nothing yet.
I hope everyone on their chemo breaks are doing well, and remain hopeful. Good night
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Donna, we take good news in all forms and sizes. Whether it be making a nice dinner, getting a good night's rest, or labs holding to allow for treatment, it's all celebration-worthy! Glad your MO is pleased with where you are.
Kayla, so sorry to hear you have lingering pain issues. I hope lab results are in your favor for next cycle, and that Halaven gets things quickly under control so you get closer to feeling normal.
If Pajim is on schedule, she has had her surgeries and is starting rehab today. Here's hoping everything went smoothly, no surprises, and you are well on the mend.
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You’re right Jaylea, even the small things are victories when the reality is that we are living one day at a time, so a good day, week or even month is so significant. I feel like I am on a bit of an upswing since I am feeling fine, but I am mindful that the tumors are there, they are large, and they are stubborn.
Kayla, I had a tram flap also with no complications other than that side hangs lower than the other but I have learned to live with that. Just keep pulling down my bra on that side, oh well. As far as the tumors, I think I can feel three out of four of them. They are very solid, very hard. MO poked and prodded and pushed on them and none of that caused me pain. I can feel that they are there, especially when I am lying on my back. There was only one period when I felt pain from them, sharp stabbing pains in the front right side and a sore back, but then I had four treatments of AC which shrunk them somewhat. That ended in May, and no pain since. I hope that your blood work shows that treatment can happen. I’m feeling that Halaven could be a good drug. Here’s hoping it works for you and helps to relieve the pain..
Hugs, Donna
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Hi all, just checking in to see how everyone is doing. Even though I've only been off treatment for a week, I already feel more steady on my feet. I'm hoping that continues and maybe gain a couple of pounds!
The big news in my area this week was power outages. Thankfully we never lost power but several neighborhoods around me did, and some are still without power, this heading into day 3. Everyone is up in arms, so much disruption. Hopefully PG&E will refine their models so this type of occurrence is rare.
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Jaylea - I hope the treatment break is exactly what your body needed; it sounds very hopeful. Yes, if you can gain and keep on some weight, I think that will help too. And let's hope the electric company fixes their issues...3 days is just incredible to be without power. I'm up in Canada, so I'm unaware, but some are saying money is at the root of it???
Donnabelle - I've yet to talk to another since having my TRAM flap, very nice to meet you
I'm finally going to wean off steroids and looking forward to that, maybe even lose some weight
I had an ultrasound yesterday to see if they can drain some ascites (I won't know for a couple of days). The radiologist, not a tech, performed it. I don't know what he did, but I actually have some pain relief, without any draining...how? why? I don't know but I'll take it. It's Thanksgiving up here this weekend so I won't hear about the paracentesis procedure until Tuesday.I wish all a wonderful weekend. Shetland, you remain on my mind, I so hope you're better. Pajim, hope your recovery is going better than expected, Mike hope you and your wife are continuing to improve. Wandering - hope your Wednesday MO went well and AmyQ good luck on Monday...
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Jaylea, I hope you continue to feel better each day you’re off treatment. Our winds have died down today and I hope yours are on their way out. There are some fires around the state but none right here. My daughter is in Humboldt county and her electricity was turned off early Wednesday as a preemptive measure but turned it back on yesterday when they decided the wind wasn’t going to be so bad there. They had just a few hours to prepare and she was not prepared but it was a good learning experience. 😂
Kayla, I hope you feel better without the steroids and your ultrasound has gives the doctor the information needed to drain the ascites. It sounds painful. Rest up we’ll over the holiday weekend!
My MO has decided I need a biopsy on the lymph nodes since they are larger and sore and will test for genomics and regular hormones to see if it’s different than the primary tumor since nothing else is growing. My insurance approved it but not for the facility requested so more phone calls... I really wanted to get this scheduled as I’m gone for a week and need it done before I see him in 3 weeks. I try not to complain because my insurance covers more than most but times like this really frustrate me. I’m going to Oregon for a week and plan to eat lots of crab and try not to stress about it. I’m having chemo the morning I leave and again the day after I get back. I don’t want to give this cancer any chance to progress!
Everyone have a relaxing and peaceful weekend! My granddaughters are here so I will have neither...
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Hi All,
I had my first infusion of Halaven today and much to my surprise, was in and out very quickly, a total of 75 minutes. I missed the part that said the injection itself takes 3 to 5 minutes and the rest of the time for things like blood pressure, temperature, questionnaire etc takes a few minutes longer. I was quite embarrassed when I arrived as I looked like I was a going cross country for a month. I packed a cooler with socks and mittens filled with ice packs to hopefully prevent neuropathy but I had not one extra pair but three!
In another bag I had a prayer shawl, iPad, headphones, snacks, diary, medical documents, heating pad, lidocaine and cellophane for my port, my anti-nausea meds, slippers, paid meds, water bottle, nursery books for my 2 year old granddaughter, snacks for her, cribbage board and cards, to name a few things. It took me longer to unpack everything than it did to receive the infusion. Needless to say, I felt a little ridiculous. But I am not complaining. Next week I will know to keep it light, get in get out and get home.
I hope you all have a good week. We had snow over the weekend, NOT good. Too early!
Amy
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oh Amy, I’m so sorry you had those embarrassing moments but I have to admit, it made me giggle. I should have let you know how quick the treatment really is. For my second infusion of cycle 1, we found parking went in for treatment and left the hospital parking lot all in 35 minutes. So far my Day 2 and 3s have been very tiring, I even nap but as far as the other side effects very mild for me so far, my troubles are more from the cancer’s location. Thank you for the update and let us know how things go...I know I’m curious because I’m only cycle 2 day 8 on Thursday.
All the best to everyone, look forward to the updates.
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Shoot, just wrote a nice long post and with one wrong keystroke it all disappeared! Let's try this again...
Amy, glad the infusion was quick and with no issues. Your packing list made me giggle, too. I hope the eribulen treats you kindly with minimal SE's. Good on you for icing - keep up with it. Because the infusion is so quick, sometimes you need to fight for icing time. I would tell my nurse that I needed 20 minutes to ice before the injection. They would access my port, start the saline, and say we'll see you in 20 minutes. Then I would ice up hands and feet and be ready for them when it came time for injection. What premeds are you on? I'm on just Zofran, others have had steroids, too.
Wandering, Oregon sounds lovely, what part are you visiting? I hope your facility is approved for the lymph node testing quickly. Like you, I'm grateful every day for my coverage. I have Kaiser, same MO throughout my 13 year cancer journey. I am going on Kaiser medicare advantage in December, I hope it doesn't change anything with my coverage. I've heard stories about scans being declined, etc.
Donnabelle, Shetland, Pajim, I'm thinking of you and look forward to hearing how you're doing soon.
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I have had an awful week after Cycle 3, round 2 which was on 10/8. I started the next day with weakness and deep fatigue and a little nausea and the mouth sores intensified. Started getting awful headaches on day 3 and 4, and then it dawned on me....I have a stupid sinus infection. I have been on antibiotics and Sudafed and nasal spray for 5 days now and am finally feeling somewhat human again. I think my last sinus infection was in 1995! The recovery was a lot faster back then!
In the meantime, yesterday I had an appt with an interventional radiologist to get info on the Y90 procedure. I went in to ask questions and found that they had already decided I was a good candidate and booked me for the procedure in November. My head snapped and I’m still processing this. I do know that nothing in over two years has worked on my stubborn liver tumors, so it won’t hurt to try something different. If you have tumors in both lobes, they do one lobe at a time. They will start with my left lobe, since it is virtually covered in tumor. I can stay on chemo during this time, which is making MO happy. It is scheduled for Nov. 14 which is only a week before our Thanksgiving trip back east, but the doc said I should be fine. Gulp.
Glad to hear everyone is hanging in there. Amy, I loved your story. It sure does help to laugh at what we go through!
Would love an update from Pajim and Shetland. Hope you both are doing well.
Peace and hugs,Donna
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Donnabelle,
I'm sorry you've been feeling so lousy. I do hope you finally find some combination of treatment that gets rid of all the tumors in your liver. Knock wood, I'm doing just fine so far. I hope all have a good week.
Amy
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good morning to all,
Wandering - I'm not sure what day you're heading to Oregon but hope you have safe travels but of course get that biopsy in asap.
Donnabelle - sorry about learning of your sinus infection, I am so glad that you're getting over it though. Your wbc being chronically low would have me worried about recovering from even the simplest of infections. Having a Y90 procedure booked so quickly is amazing to me. I still haven't even had my complaints, completely addressed yet.
AmyQ - Nice to hear all is still well. I do believe that this treatment maybe very tolerable for me as well.
Mike, Shetland and Pajim...hope to hear from you all soon.
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Hello from the rehab hospital!! I’m still alive, LoL.
if you’d asked me a week ago I’d have turtled on you but I am feeling somewhat better.
After lying in a hospital bed unable to move for 14 days they now have me moving. I can walk very slowly with a walker, but I can go to the real toilet with supervision.
I even got a shower on the second day here. Whimpered my way through it but I’m properly clean. Wheee!!
There is light at the end of the tunnel. It’s not close but it’s there. Each day I get a little better. I still can’t get out of bed on my own but getting closer on that too.
Meanwhile I haven’t had chemo for a month! Guessing it’ll be another month before it’s discussed. So guess what? HAIR!! Soon there will be enough to shampoo. Wonder if I remember how?
Donnabelle, I’d love to hear more about the Y90. My center doesn’t do it.
Amy, hope your week goes as easy as your infusion.
i have an ‘accessing port’ story to tell but need a real keyboard. My laptop is still in the closet
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Pajim, your post is a ray of sunshine! I'm so sorry you've been put through the ringer, but glad to hear you say there's a light out there in the distance. Each day that light gets a little closer, walking will get easier, and you'll be getting out of bed on your own directly. I hope the food is decent and you've got enough company and diversions so that you're not bored out of your gourd.
Donna, I hope you're feeling better from the sinus infection. Amazing that they went ahead and got you on the schedule for Y90. I've heard very good things about it. I hope that between that and this tx, those stubborn liver mets will stop dead in their tracks.
I'm two weeks into my chemo break and am enjoying a nice energy lift. Like Pajim, I've got increased head fuzz and a defined hair line. DH is jealous!
Sending love to all ~ JL
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I haven’t read above to catch up with everyone yet; just posting to say hello and I am ok. I haven’t felt like going on BCO much. Tired and tired of cancer.
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Shetland Pony, I'm sorry you're emotionally and physically spent. You have every reason to be. Sometimes I wish I could wave a magic wand and go back to the days of life before cancer. Life when I assumed I'd live to a very ripe old age. Life when I just knew I'd see all my children grown, marry, have children and watch grandchildren grow and marry.
I wish that for all of us dealing with such an enormous life-changing event.
I start round 2 tomorrow, only I will pack much lighter. I'll have my frozen socks and mittens and that's about it, unlike the two suitcases full of activities, shawls, snacks, etc.
Other than 12 hours of stomach aches and vomiting on day 5 last week, I had a good week. I've been keeping a daily diary since starting Halaven so will be interested in seeing how week 2 goes.
Stay well all and know you are in my prayers.
Amy
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Pajim - I am so humbled be your strength. You find humour in such pain. I am so glad you checked in and as you recover I hope you're able to share your progress with us, but completely understand if you have other things on your mind. have they discussed when they anticipate starting the chemo again?
Shetland - So glad you checked in. And with you too, its totally understood that sometimes its just so hard to be so enveloped in cancer. But know you are thought of daily.
Jaylea - do they still monitor bloodwork on your break? Donnabelle sending continued virtual support. AmyQ - journal great idea.
May our week be full happiness and love!
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Shetland, thanks for the check in. Glad to hear you're ok, and totally understand that with the weight of everything we go through, sometimes reading and posting about more cancer stuff is just too much.
Amy, you won't need that Sherpa this time around! Just an fyi that week 2 may feel a little stronger than week 1. Did you get something for the nausea/vomiting? I use Zofran, it seems to help.
Kayla, I get a month off lab sticks, too. I have a call set up with MO at end of month and we'll discuss next steps. I'm coming to terms with restarting Halaven, while keeping close tabs on SE's. I just don't want to burn this line of treatment yet, especially since it is working.
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Wow, Jaylea, you’re having a regular vacation!
Shetland I hope your day today is better than yesterday and tomorrow is even better.
Amy, a diary is a really good idea especially after a few cycles and you can’t remember at what point you had which side effect and what else you were doing to see what might have caused it. Even though I’ve settled in to my schedule I get thrown for a loop when a new SE shows up and I don’t know what I did that was different. Some nausea premeds might be needed; sometimes tums or rolaids work too.
Pajim, I hope every day you enjoy a little more activity and freedom. And another month off chemo - great!
Donna, how nice to have your Y90 scheduled so quickly! I hope it all goes well with great success!
I’m in Beaverton enjoying the color but not the cold/wet, but I did have fresh crab last night. Finally heard from the person who schedules biopsies and the radiologist doesn’t want to do a biopsy until I’ve had a mammogram because I had a biopsy on the lymph nodes in January of last year. In the meantime they’ve become much more painful and hard to sleep. I traveled in between treatments so will have week 2 treatment the day after I get back and will talk to the nurse about what to do. So frustrated. Thinking of finding treatment at a cancer center where the doctors talk to each other.
Everyone have a great week!
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This thread has been quiet, hoping to hear from all our Halaven friends.
Amy, how did week 2 go? You must be starting your week off.
Wandering, I hope you got your fill of fresh crab. I hope you're getting answers on the painful lymph nodes.
It's smoky and windy here in Northern California. We're once again having planned power outages. Neighbors have lost power, but thankfully we haven't. The Kincaid fire is about a 100 miles away. A number of communities have been evacuated. Hopefully the fire will be contained and all those families will go back to their intact homes.
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Good afternoon all, Thank you for bumping the thread, Jaylea.
I was thinking about you California girls when I saw the news the other day, fires and more power outages. Up here, in BC Canada, during the summer months, we often have extremely smoky skies when the fires are hundreds of km away. I hope the winds die down and the fires all become controlled and extinguished. And everyone is safe.
I continue to fight extreme fatigue and this weekend have developed a cold, so far just sinus, but I am/was booked to have a port inserted next Friday, I’ll have call to cancel tomorrow . My Day 1 of cycle 3 was going to be postpone anyway. Oh well, Murphy’s law these days. I do lurk but never seem to have much to report. I spend time trying to find others with similar symptoms to get some ideas but I don’t seem to find much
Jaylea, do you continue to feel better the longer you’re off treatment?
Hope physio and recovery are going well, pajim.
Have wonderful remainder of the weekend
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Kayla, I didn't realize you're a Canadian cousin! My Grandmother came to San Francisco from Victoria. I've been there (to visit family) and Alberta (Banff) and absolutely love it when I'm there. DH and I were in Victoria as the last stop of an Alaskan cruise and he pointed out that everyone was as polite as me. I told him that's where I get the polite gene!
Like you, I struggle sometimes to come up with news. Extreme fatigue, check. Sorry to hear about the cold and postponed port install and tx. I was supposed to get a minor issue taken care of today but hospital called and cancelled - no power. Only emergency dept was up and running with generators. Plus they're taking in patients from the hospital in the fire area, which is being evacuated. Oy. Yes, I continue to feel better off treatment, not major, but noticeable. Neuropathy has improved, I'm up 4 lbs. and can actively help with dinner, dishes, etc.
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Hi all, I've graduated from the rehab hospital to home. So now everything hurts more and I'm not walking as well, LOL. But we have found that one of our chairs is comfortable enough (and high enough) for me. Plus we bought a reading pillow for the bed. I'm still taking morning naps.
AND I now have my laptop back. I need to read the last few pages to see how you all are doing. My apologies for not keeping up enough to provide personal responses but promise that I'll do that as soon as I can.
Man this is hard. My upwards "getting well" trajectory has flattened out. The physical therapist who came to the house today (and will come twice a week) says it will be a long road. Patience is not one of my virtues. I want to be walking and pain free RIGHT NOW!! Everyone keeps reminding me that I can't compare myself to a typical 'hip replacement' patient. I had two so there isn't a good leg to rely on. [oops, now I'm whining again]
Radiation to the right leg starts next week. We drove to the cancer center today to meet with the RO. It was a painful experience. I came close to melting down. The jiggling of the car. . .their wheelchairs are not comfortable and I couldn't sit in any of the regular chairs for more than 10 minutes at a time. Guess it's good for my strength building to have to keep getting up, but oy!
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Pajim - oy indeed. It is good to hear from you. It must be extremely painful, can't even imagine. Its amazing that you're able to get around at all. Radiation starting next week, they are putting you through the ringer, what an incredibly strong individual you are. Whine away, if there was anyone who deserved to, its you. Have they mentioned when chemo will resume? I still cant wrap my mind around what you're going thru right now.
Jaylea - I am just a few hours north of Victoria, and coincidentally raised in Alberta. I saw the news again and see how horrible the fires are spreading. It terrifies me.
I went to my pcp and she has given me the OK to have my port put in on Friday, the cold I have is very mild, I'm on antibiotics as a precautionary measure, its such a relief. Then cycle 3 can start next week. And in December I should have my ct to find out if halaven is working.
Donnabelle, Wandering, Mike, AmyQ, Shetland in my thoughts and prayers as well.
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Pajim, thank goodness you're home. What a long, complicated journey you've been on. You mentioned radiation to the right leg, does that mean that mets caused your fracture? Are you able to adjust your pain meds to be relatively comfortable? I want so badly for things to be good for you RIGHT NOW! No patience here, either.
Kayla, may your port placement be as easy as mine was. I had read about others who had difficulty so my anxiety was through the roof. But the nurse who prepped me told me this is an "aspirin" procedure, that is, the worst of it requires a couple of aspirin. And he was right.
I hope everyone is doing well. Hugs from JL
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Hi All.
Sorry for the delay, my father-in-law passed away so had to travel for a few days for the funeral. It was a blessing, he suffered for the past two years from Alzheimers. It's a wicked disease and i hope no one you know ever suffers from this hideous disease.
Fortunately the timing worked perfectly with my week off. I'm back home and saw my doctor this morning. My tumor markers dropped significantly which was a complete shock. Knock on wood, my SE are minimal with the exception of vomiting one day, all is well. My blood is taking a bit of a hit, but I don't feel tired or weak. So I am pleased with Halaven so far.
I feel badly for those who are suffering, right now, especially you pajim, or anyone else who is suffering in silence. My prayers for you all.
Happy Halloween!
Amy
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Kayla, hope your port placement went without a hitch today.
Amy, my best friends mom suffered through years of dementia. Her passing was a relief for her and her family. Hideous is the right word. So sorry for your loss, I hope your family can find some peace in the quiet moments. Glad to hear Halaven is treating you well.
I talked to my MO, she surprised me by giving me the option of staying off treatment until after Thanksgiving. Her first question to me was to ask how I was feeling. I responded that I feel better than I have for months. She took that as a good sign - said people whose cancer is advancing while not on treatment just don't feel very well. But I declined the extended break. I'm mentally prepared to go back on. So Monday I'm back on Halaven.
Hoping everyone has at least one good thing happen this weekend! I'm doing labs tomorrow and going out to lunch afterward.
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Hello, my friends. Thinking of you all. I will stop in shortly to catch up!
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Good evening. How's everyone doing? I'm thinking of you and hoping treatment is treating you kindly.
My hair is coming out when I brush it or just run my fingers through it. I am obsessed about touching it, but wish i wasn't. I'm not going to shave my head but I might get a cute pixie cut and wear my wig when I feel the need to be more covered. Otherwise, I don't seem to have any other SE.
How many rounds are most of you on? Has anyone had a scan yet to determine effectiveness? Mine has been schedule for mid-January. Has anyone been put into remission or NED?
Take care -
A
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I just read the last two or three pages here, and I truly appreciate how you all make me feel cared about and included even though I was not posting.
Pam, what a difficult road for you. Your spirit is strong. Please take good care of yourself and listen to your body as far as pacing yourself through rehab. Jaylea, may you continue to benefit from the recovery time your chemo break gave you. AmyQ, hello, it’s nice to meet you! Very good to hear your TMs dropped. Kayla, how’s the new port? Did you get your biopsy, Wanderingneedle? How are you Donnabelle? Mike?
It feels like I’ve been away from the thread a long time.
I did learn to do my IV antibiotics, and I did take a short trip during that time. I am glad fear did not stop me.
I am typing from my hospital room. It’s my fifth time in as many months. Early on Monday what had been mild off and on abdominal pain got bad; I couldn’t move in bed until the Vicodin I asked DH for kicked in. Saw my onc for regularly scheduled appointment, after which I was supposed to re-start Halaven after the month of IV antibiotics for an abscess. But of course she would not send me for an infusion. She called the endoscopy doctor who said maybe my biliary stents (second ones, recently installed) had migrated, and I was sent for x-ray. Next thing I know, I’m sent to the OR waiting room. When I get back to the patient area, I am told to prepare for my stent to be removed. Hold on! I want to talk to the doctor before I go any further. So he says that the x-ray showed the stent had not migrated downward, but cannot show if it migrated upward. He has been asked to remove them and look around in there, and clip any damaged small intestine. (Via endoscopy.) So I say, why would I do this without having a CT to rule out abscess or tumor as a cause for the pain? He agrees and says he will arrange an order. I wait the rest of the day, fasting and very hungry, and by night I am given a hospital room and no CT. All the doctors said it was the other doctor’s job to order it. AND there was now an order for NPO (no food or water)! There was no reason for this, and I had been fasting all day for nothing. I’m afraid I was a little loud explaining my position to the nurses. They were working on it, but time was running out to order food. So my husband ordered a guest meal that I recommended to him and it was eaten by somebody. I resumed fasting this morning and got my CT today, and there is something new that may be tumor or an abscess. Biopsy tomorrow morning.
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