Is there a posting or other source listing details and ways to victoriously endure 6 rounds of Docetaxel? My husband is 70 stage 4 . He is on immune suppressants due to a prior liver transplant. He was given Neulasta for the day after Docetaxel(D).
His biggest struggle right now is sleeplessness due to discomfort from body aches. This is day 4 after D.
The more we go through the more deep respect and awe I have for all of you and your spouses❤️
Best hopes for all, along with prayers.
Sherry
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Check NC laws first. TX has a program where I can get low-dose cannabis products legally. (0.3% or less.) It's worth a shot. Also, because in TX the laws are written "percentage by weight", it's possible to legally order gummies that have 14mg of THC/CBD whereas the legal limit for recreational in NM is 10mg.
Thanks TA! This is good verification. Yes to the steroids normally taken with Zytiga and extra Dexamethasone before, during, after infusion. Yes to antihistamine, just started today. Great to know IV fluids help!
Best to start the antihistamines day off or day before infusion so you are on them when the Neulasta gets injected. Also note that the anti nausea drugs he probably got have a long half life and can cause insomnia.
Whoops, I was wrong about the anti nausea drugs. I thought I read that when I was trying to figure out my own insomnia but I looked them up again and I don’t see that as a listed side effect.
Just finished six cycles. My experience was that the first week was the worst with fatigue and taste and then improved every day after that before the next cycle. Also found sleeping tough in the first week. Otherwise had fatigue but no other serious side effects. Hopefully he can get through it.
The chemo crashes coming on 2 to 3 days after the infusions lasted 5 or so days for me. I experienced restless leg syndrome but all thru out my body. Neulasta made it worse but I had to have the Neulasta. Antihistamines (Claritin) did nothing. Finally when I was prescribed hydrocodone/acetametaphine I was able to find relief and get some sleep.
I had a couple chemo infusions without Neulasta follow up and the symptoms were less. Neulasta causes an activation in bone marrow to produce WBC's and I suspect that might have something to do with it. And for me with bone mets thru out is probably why chemo alone also caused such a ruckus. However it was nerve symptoms as well. Electrical spikes in my back, arms, legs. Weird and uncomfortable.
CAMPSOUPS, Interesting how not having Neulasta affected you compared to how you felt with it. My husband also has many bone mets. The electric spikes do NOT sound nice…have they stopped?
It’s different for everyone in regards to which is the worst session and which side effects hit when, if ever.
A lot of the sleeplessness the first 2-3 days each cycle is from the dexamethasone that they infuse just before the chemo itself, and presumably that he takes as pills the day before and day after.
Suggestion is to take steroids at home as early as possible in the day. Also, check with your doctor but I got “permission” to skip the second dose on the day after. I didn’t, but it might help.
I suspect he’s more noticing the pain because he’s amped up on the corticosteroids, but if it’s the actual pain I’ll second the hydrocodone recommendation.
There,s an excellent post by AlvinSD from back in December or so giving lots of useful tips for making through all six sessions.
I’m 4 cycles in and several of these tips were very helpful. #5 in a week. Not sure about the icing for the mouth. It either didn’t help me or I can’t imagine how bad the mouth gets without it.
Interesting the pain can be noticed more acutely on steroids…not exactly how to determine which it is but good to be aware of..very helpful! Thanks for pointing me to AlvinSD’s post!
More like he can’t sleep and feels pain, so is blaming the pain for not sleeping, when it’s actually the steroids keeping him up, and since he’s up he’s noticing the pain.
Just my own theory/experience - smarter people than me might not agree.
If lack of sleep or pain are that bad best advice is to call your doctor about it.
Sleeping has been tough for me my whole life, and a bit tougher during chemo.
Appreciate your thoughts and opinions! What you could be it, as time passes hope it becomes clearer. Did contact doc’s pharmacist. Claritin recommended for pain, waiting to see if that makes a difference. Really stinks not to sleep well and I’m sorry to hear it’s been a problem for you so long!❤️
sorry to hear about the nasty side effects hubby is enduring. Hoping they will ( as people here have said ) lighten and subside quickly and he’ll feel better soon. Hubby is lucky he has you on here in his behalf advocating so strongly for him. Wonderful caregiver support.
I associate the toughest pain with the neulasta shot. My bones ached with fairly frequent shooting pain for 3-4 days after the shot, then it all went away. The cycle happened all 6 rounds. I took tramadol and Vicodin during the worst of it, but my white cell count stayed in range, and I came through with no other complications. And my spine mets shrunk. I wish you the best. - Will
Will, thanks for your input! It’s been my hunch also that the Neulasta has added to the pain. Good to know you were given prescriptions to help with it. Great that your WBC count stayed good! We definitely don’t want to end up in the ER!
Celebrating with you that those spine mets shrunk!👏. Fight on my friend ❤️💪
Often Claritin seems to be the first thing and I hope not the last thing offered as you and I can attest it isn't enough to dull the pain from Neulasta side effects for some of us.
I see from an earlier reply you made that he just started the antihistamine today. I was on docetaxel for my breast cancer, and my husband and brother were on it for prostate cancer. For all 3 of us, I actually started the Claritin the day before chemo and continued for a whole week. That made all the difference! And we all 3 drank tons of water. My husband and I preferred Hint brand water, with a little flavor, and made sure we drank 6 bottles each day for the first 4-6 days after chemo.
I ultimately needed my dose reduced to 80%, due to GI side effects, but the bone pain was very minimal with the Claritin, if at all. The dose for docetaxel is weight based. For patients with a higher BMI, such as myself, there is really no guidance to cut the dose so my first dose was huge. 80% dose was much more tolerable. (I am also 70, by the way.)
Right now, because he just started the Claritin, it might be hard to get in front of the pain so try Tylenol and ibuproprofen, alternating, to help control the discomfort which should be gone within 24-48 hours.
One other tip. Make sure that second dose of the dexamethasone (or other steroid he is prescribed for a few days) is taken no later than 4 pm. That stuff will definitely add to the sleeplessness. Wow, was I wired on that. I think to the point of being comical. It really affected me!
Best of luck to you. There are so many little tips and tricks to make docetaxel tolerable. My brother was 81 when he has it, and he did great!
Are you icing hands, feet, and mouth starting 15 minutes prior to infusion and continuing for 15 minutes after? That worked to avoid neuropathy for all 3 of us, and keeping our mouths cold really helped with the dry chemo mouth, the taste buds, and overall kept our mouths healthy. If he does develop a metallic taste in his mouth, plastic silverware really helps.
You’ve got this! As TA mentioned, IV fluids given at his infusion center can really help. My husband and brother didn’t need it, but I sure did. Don’t be shy to ask!
Leebeth thanks for all of your tips! He’s icing hands and feet but not 15 minutes after. I’ll tell him about that. He woke up feeling MUCH better this morning. Not sure if we can pin it to the Claritin but wow, what a difference! He said he’s even hungry which he hadn’t been the last 2 days. I’ll let him know about taking the Claritin the day prior to the infusion in addition to the week following. How encouraging to hear y’all have done so well with chemo at your ages!
I’m sure it’s been a challenge for all 3 of you but I hope you’re all living in victory over this beast! Hugs to you!❤️
A lot of good advice here for you. All I can add is the more he can move the better. I understand he may not be up to much, but it’s the best antidote to all of this. Great luck to you!
Yes! Great advice! I’m hearing that! Good to hear you can vouch personally for this! I told him this last night….trying to be loving, understanding and discerning when I give suggestions!😁
My spouse had pretty radical mood swings and his doc reduced the steroids to only 5 mg prednisone that he took on a daily basis in the morning only. MO also reduced the pre-infusion steroid on the day of the infusion. Worst SE were day 2-3 and lasted for about a 7-10 days. Just started to feel decent when the next reatement was looming. That was very difficult. Fatigue and taste issues were most prominent SE. After 4 rounds, the PN in his feet became very very concerning. MO wasn't convinced that icing would help so my spouse never tried it. PSA kept rising after 4 rounds of docetaxel (18 up to 68) and one of cabazitaxel (up to 114) so now he is on Pluvicto (with a positive response). I can't say that SE ever got better after each docetaxel infusion. And the single round of cabazitaxel was worse. It's been 3 months since last chemo and PN is still very bothersome. I'd recommend trying the various procedures to reduce harm since the literature says PN can be cumulative and even permanent. Others on this forum have done fasting and icing. It's amazing to me that some patients can tolerate so many rounds of docetaxel etc. Clearly, everyone is in a different state of health and has individual responses to various drugs. I wish you the very best. ❤️
Alohapickle, y’all have had some misery!😞. Hoping the Pluvicto proves to be the answer. Thanks so much for your suggestions and for caring enough to answer! ((Hugs))❤️
MO reduced steroids taken before and after infusions because DH was unable to sleep at all the first two days after his infusions. I woke up to check on him one night and he wasn’t even in the house-he was out in the garage piddling around. He didn’t have bone pain, but had extreme restless leg syndrome. As someone else mentioned, mood swings are possible from the steroids-I was not prepared for that. Best wishes to you both.
Please trust those of us who have gone through 6 months of chemo. The only thing that got me through it was cannabis. The first month I abstained, big mistake. Once I started using for sleeping and pain, I returned to tennis and golfing during the next 5 months. There is a time and a place for most things. This is your husband‘s time to use cannabis.
To update you on my status, since you were inquired about the Duke Champ trial earlier. I had my 4th chemo/immuno treatment today. I usually feel like I can move a mountain on Day 2 after treatment so off to the golf course tomorrow I hope, not to move mountains but to hopefully make some birdies! 😊 Around day 3 I usually start to decline with mild flu/hangover like symptoms and fatigue that remained to roughly the 6th day after treatment I hope this 4th treatment is no worse than the last. I am blessed thus far in tolerating the treatments well with minimum side effects from the mixed cocktail of Jetvana, Cabazataxil, Opdivo and Yervoy.
The great news is the ct scans earlier in the week show my lymph nodes and bladder tumor have decreased in size by more than half from my last scan and my psa was .03. I am truly grateful for all these blessings but cautiously optimistic moving forward.
You’ve received some great advice here and I believe you are in great hands at Duke. I hope the situation continues to improve. Ya’ll are in my thoughts and prayers as well as all the folks on this site battling this awful beast of a disease.
God bless and God speed,
Best,
T
First, understand that your husband is embarking on a difficult time for this bastard of a disease. It’s no party. I am speaking as one who took this trip in 2004; alternating nine infusions of Taxotere alternated with nine infusions of Adrimyacin over a six month period. Quite a bit different than most in a six month clinical trial,
Second, everyone who has responded have good intentions; however their tumor load and co-morbidity factors are vastly different. Plainly stated, their experiences with chemotherapy have little bearing with your husband’s treatment.
Third, take your marching orders from his Medical Oncologist. They are trained to provide the best healthcare available and treat various side effects of the drug. Chemotherapy attacks the cells that are rapidly dividing like hair, nails, and mutant cancer cells. Add his co-morbidity factor into the mix, and different side effects happen. It may be as simply to add relaxants or even melatonin. However, your pros will know. Explain the problem to them, and follow their instructions. You can bet that his Hepatogist and Oncologist are talking.
Hi Gourd Dancer…you’ve been fighting a LONG time! Thanks for your valuable input. We are turning to our MO and his team as we need to and they’ve been helpful and quick in their response. While I value all the info I get here, it’s our MO who calls the shots ultimately.
For me the side effects were pretty rough 2-3 days after the D infusion and the worst of them lasted for about a week before improving. They got more difficult with each infusion, 4-6 were the toughest. I’m guessing that much of his pain is from the Neulasta, I had to have a couple of infusions of it during chemo and the way it makes your bones ache is pretty rough. I’m empathetic towards your husband, chemo is something to be endured, honestly you just gotta embrace the suck and get through it for the greater good. Perhaps your doctor can prescribe something to help with the pain or help him to sleep. Sometimes you have to take a medication to offset the side effects of another.
stage 4 in 16. The chemo didn’t hurt to bad but the neulasta shot the day after sure shut me down. Only thing I could do was stay in bed and try to sleep. I was on anti nausea meds and Tylenol for the aches. 6 rounds. Good luck warrior
Lots of shared experience above, I'll add a little of mine in the hope it helps provide some additional insight.
This is definitely one of those things where the "treatment" at least in an acute sense, is more difficult to accept than the disease it's treating. But we all hope it has the desired effect, so we submit to it!
Preparation is key, some have noted improved results if following an intermittent fasting schedule, 24-48 hours prior to infusion. I tried this, but didn't notice a difference, so after 2 infusions, abandoned the try.
I looked into the cryo neuropathy effort, unfortunately the team didn't process my request early enough to get the skull cap in place for the 1st infusion. My hair began falling out pretty much a few days after my 1st infusion. I also experienced the "metal" mouth taste thing too. So... I requested for the 2nd infusion, that they provide ice (bags) for my hands and feet, and also cups of ice to chew while getting the infusion. I cannot say with certainty that it helped with the neuropathy in my hands and feet and I definitely had/have some, but the ice chips absolutely eliminated the metal mouth thing and I had no mouth sores either. I do still have some neuropathy in my finger tips, but it has slowly, very slowly abated.
I went from pre-diabetic to full blown with the introduction of ADT and also the steroids provided for Docetaxel. I received the Dexamethasone via infusion prior to the Docetaxel. I can absolutely attest to it having an effect and mitigating some of the side effects of Chemo and I'll explain. 1st is that the very first infusion, I didn't know what to expect... But if you dropped off enough wood and a box of nails, I could've built an addition on my house that day and the next with what that stuff does! Lol... Definitely offsets the Hammer that Chemo can be. How do I know? Well, unbeknownst to me, my MO had seen in my blood work prior to my 5th infusion that my blood glucose was elevated, but he didn't ask me anything or say anything, he just adjusted my Dexamethasone without my knowledge by cutting it in half... I can tell you I was confused because the next day, I felt like I got run over by a semi tractor trailer... The usual experience had been day 1-3 being ok (see above), then 4-6 being a bit rough, and 7-10 improved, and the last week before the next infusion kinda feeling (new) normal. Not so with the limited Dexamethasone... I had thought that it was just because it was the 5th infusion as it's been noted by others how the effects build up with each infusion. So when I arrived for my 6th and final, the nurse asking me how things were, I explained how I felt and she told me my Dexa had been cut, and would be that day too. Well, I certainly was able to deal with it better knowing what was about to hit me... Lol
I was very hungry after each infusion, as noted I tried to limit food intake just prior to infusions. Sometimes this was tough as the nausea associated with chemo kind of was disruptive once or twice. But ultimately, we would go and get a nice lunch right after infusions...
Hair grew back, even better than before for a while, but has returned to pre treatment normal, albeit more grey now. Funny thing is all my hair that came out, was all BUT the grey! Hahahaha. You can imagine to look. And stamina definitely suffered by the end of chemo... Midway through chemo I had still expected and was planning to return to work (57 yrs old), but by the time I finished, I had already initiated my retirement plan. Largely because of the effect upon stamina, fatigue.
Last note is understand that the chemo effects the entire body! Not just the cancer! I think it affected my skin in a huge way. The skin we carry is considered an organ, and it is fast growing cells which are effected by the chemo too. My skin changed and has been slow to return... I had a definite "pale" or greying of my skin tone. And was very very dry as well. Early on the nurse had noted to use skin products in the shower and afterwards to moisturize the skin. Maybe I didn't use enough?
Just rambling now with memories popping back to mind. Hope it helps!
Cooolone! What engaging writing! Guess you could have built several houses if supplied the nails and wood😁! What a stark comparison for you with dexa being cut in half! I hope you have been successful in keeping the diabetes under good control!
Thanks for all of your input! It’s very helpful! Best wishes for a long healthy life!❤️
Thank you! Ahhhhh, the glucose control is a battle made worse by the androgen therapy. Add to it a recent path crossed with Oxalate kidney stones, with the diet for each, being inverse, ie, what's good for glucose, is not good for stones! Like all we deal with in this journey, a true conundrum! Lol. But life is life and it's just a hiccup along the journey!
And to you as well, a long and enjoyable journey! All the Best!
Pray your fella is responding to medical treatments. Thank you for being such a responsive caregiver.Best advice is ask questions and follow the advice of your medical team for your fella's medical condition.
I am a healthy 72 year old just completed docetaxel treatment #4. Every day I wake and record how I feel and every day is different. I keep composene and pepis in my pocket!
My main concern is that PSA now exceeds 500! I am loosing hope that this "weed killer" as my former oncologist called it is working. In 10 days I have a consult at the Medical University of SC and hope for a more responsive medical plan to restore my faith to overcome the toxicity of treatments.
Please keep hoping! I’m hoping for excellent outcomes for you even with the big PSA rise. I hope the USC consult will give you BIG Hope! If not, maybe you can travel north a bit to see our Doc, Daniel George at Duke?
You are on the chemo train with us…praying it ends up to truly be a ‘weed killer’ for you!
Dr. Lilly sent me over to Dr. Dincman, he is a associate professor at the medical college,I saw him in December. He told me he trained under Dr. Lilly, He only see patient on Monday, also does his own research. To me, his just a younger Dr. Lilly. I had a video appointment with him in March. I’m very happy with him. I will have my next video appointment with him in June. Good luck with Dr. Benjamin!
In addition to all the great comments already provided, I encourage you to speak with a Naturopath who can prescribe supplements to complement your Oncologist's recommendations. Even though it is hard, I also encourage exercise to the maximum degree possible. And finally, eat healthy focusing (but not consuming solely) whole food plant based (WFPB) products. I personally follow roughly a 80%/20% WFPB diet but eat animal protein as my body requests it. I wish you the best.
My father completed his 6 cycles this month. Like you said he also developed sleeplessness, but also with whole body ache, from the 4th day post D. Our MO advised him to take two pills of paracetamol 1000mg twice a day for 3 days. This took away all the pain and also helped him sleep better as the pain subsided. Hope this helps.
I don't know if I have any real pearls. I had pretty bad joint pain the first two weeks of each cycle. The second week I had really bad diarrhea. I never went any where without a change of pants! The third week I began to feel a little better and tried to go away and campout or hike someplace new (very gentle hike with no set goal). Every day I walked with our dogs for a mile. Many times I had to sit down during this walk. When I returned from the walk I had to take a nap. I really worked at staying hydrated and trying to eat regular meals. After my first dose I was pretty much in denial and went backcountry skiing with my son. I barely made it up a hill once that I usually did laps on. My ski season ended that day for year. The only thing I can say is it for fixed time and I kept telling myself it would end. I also really tried to "enjoy" the week before the next dose when I felt my best. I also got positive re-enforcement by seen slow but steady drop in PSA. I wish you well.
The replies to this thread are so helpful that I'm saving this post for the future so I have this info when it's our turn. God bless you, Sherry, and may the suggestions given here serve you and your husband well.
Thank you!!!! The support here is a huge Blessing! Hoping y’all won’t need to travel the chemo route! But I’m so happy to hear the many great reports that result from it. We all know though, life is Precious and we do well if we continue supporting one another through the best and worst of this challenge.
I completed six infusions of Docetaxel in November 2022. I also had some sleepless nights and pain shortly after each infusion. In my case this was attributed to the side effect from dexamethasone. I took two tablets twice daily the day before Docetaxel and two tablets twice daily for four days after Docetaxel infusion. The pain and and sleeplessness usually subsided on about the fifth-seventh day up until the next infusion. That was the toughest part of my treatment. I did not take any pain or sleep aid medications. Remember to ice hands and feet to to reduce the side effects of neuropathy. End result of Docetaxel treatment, I have some neuropathy numbness in my pinkie toes (despite ice treatment) and my toe big toe nails are getting ready to fall off. My latest PSA result March 2023 was less than .05. I received triplet therapy with Docetaxel, Nubeqa and Lupron . Bone Metastasis to spine, sacrum and occipital bone. Hormone sensitive. 61 years of age. Best wishes and God Bless.
Gpatwice, thanks for sharing your personal experience…which sounds like it was pretty tough for a few days…and without pain meds or sleep aids! Sorry to hear of the effects to your toes😞. Hoping for mega healing for you, zero PSA and great, long life! I truly appreciate your recommendations.
Gpatwice noted something that can happen and when it happened to me I was glad that I had already read about it here on the forum so I didnt worry. About 6 months after my 6th and last infusion in May of 2020 most of my toenails which had turned blackish fell off.
Then I had 3 infusions which were not benefiting me and ended recently around last December and we shall see about the toenails. Other than that I report mostly about my experience from 2020 because this recent experience was outside the box compared to then. Side effects on this recent 3 infusion journey were pretty bad. Literature says for every one infusion it takes 2 months to recover. I'm waiting to feel better. Mostly my appetite and stomach discomfort, gagging, etc. and inability to find pleasure in anything. I have gotten better over these last couple months but its been a slow go. I am on Xtandi for the first time now for a couple months so a little hard to decipher what is doing what.
My MO's did tell me that the first chemo therapy I had 3 years ago did some damage as expected ( you dont have a 100% recovery ) and so that could be causing some of my SE's. For example my first chemo therapy hair fell out after 3 or 4th infusion. This recent therapy it fell out after first infusion because follicles were damaged from chemo 3 years ago.
A Your too kind. I'm really doing well all things considered. My wife and I savor our time together in the moment.
I'm not sure why I wrote so much except that I feel sometimes that we miss the point that chemo can effect us differently so I just was trying to be an example in case others wonder why they are having a hard time.
I’m happy to hear the gabapentin helped with (pain and) sleep! My husband has been struggling with sleep but is always tired and fatigued. I don’t think he’s having pain right now so I’m not sure what’s under the sleeplessness.
I hope to hear good reports regarding your husband!❤️
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