For those of you who have done doceta... - Advanced Prostate...

Advanced Prostate Cancer

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For those of you who have done docetaxal or about to.

Costarica1961 profile image
61 Replies

It has been decided after a second opinion to proceed with docetaxal with neulasta, and zometa at the same time, starting on Monday of next week. I have to admit I am a bit nervous and apprehensive as to be expected especially given the current climate, of covid 19, although it was decided based on a 3 week doubling of my PSA and 4 new Mets and Xtandis recent failure. I currently take care of a disabled wife and a grandson ( 7 yrs of age. I run errands currently to the store and pharmacy etc always protected with gloves and mask for several weeks running. I want to be clear I am not trying to cry you a river I am just unclear if it's even feasible to consider that I can continue to be the go to guy for my wife and grandson. I realize everybody tolerates chemo differently, I am only 58 yrs old in pretty good shape considering battling this cancer for 4 years. I have tolerated all the treatments with relative ease., although I feel like I am walking into the belly of the beast next week with a great deal of uncertainty. I am specifically asking those of you who have first hand experience with docetaxal it was clearly discussed by two separate m.o docs in their opinion that, time is of the essence , actually my main doc wanted me to start chemo this Friday I asked for a couple extra days to prepare, she agreed. I do have a twin sister in another state that could help out for a few days, she is still working full time during this pandemic. Needless to say it is a daunting proposition even when things are normal. Thankyou be safe, be well to all.

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Costarica1961
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nobaday profile image
nobaday

From what I read have your hands and toes in ice water to prevent extremity nail and nerve damage during infusion and a cold cap for your head to minimise hairloss.

Be prepared to feel shitty for up to week so youwill need looking after as opposed to looking after someone else!!

STAY AT HOME. MINIMISE CONTACT WITH PEOPLE

Get food delivered, meals delivered as necessary. Have a plan/ person on/ friends to call if you need more help.

And note I have not done chemo, just noted various degrees of side effects from the experiences of people on this site.

Costarica1961 profile image
Costarica1961 in reply to nobaday

Thankyou I was looking at those cooling caps. Does insurance cover that are is it on your dime, and is it worth it, I heard it's rather sketchy if it works at all. I dont know what I dont know though. Thankyou nobaday.

nobaday profile image
nobaday in reply to Costarica1961

I would try the cap. Make a homemade one like a bag of frozen peas tied to your head

nobaday profile image
nobaday in reply to Costarica1961

Depends how much I care about your hair! Definitely ice for fingers and toes. These things easy enough to do I would DEFINITELY do it. So many stories of side effects so control what u can .I say!

Schwah profile image
Schwah in reply to Costarica1961

I used Cold Caps and it worked. But you have to be diligent with the instructions. (310) 570-2177 Soloman Is the guy I used 2 years ago do not sure if that’s still his number. I did not do it for ego purposes but rather because I didn’t want that cancer look where people tilt their head and say ,”so sorry”.... Get out and get some fresh air. Lots and lots of water. I had two bad days with each infusion but no more than the flu. Get Neulasta shit for sure

Schwah

Chugach profile image
Chugach in reply to Schwah

Just shave your head - badge of the battle!!

tom67inMA profile image
tom67inMA

First let me say that you must do something to get your cancer under control, or it will eventually disable and kill *you*, and then you're of no help to anybody. I say this as somebody who has experienced symptomatic cancer and am currently in my second dance with chemo.

Everybody will have a different experience, but as a general statement you'll probably have a few days in that first week after each infusion where you can't do anything but rest and deal with side effects. It's also true that staying active during chemo will help mitigate the side effects to some extent and can potentially make the chemo more effective though such means as improving circulation.

Since your infusion is on Monday, your worst days will likely be Wednesday through Saturday. Some men have worked full time through chemo, and if I recall correctly one scheduled their infusions on Thursday so their worst days would be over the weekend.

Good luck! And remember to put on your own oxygen mask first before helping others. Or to make another analogy, it's important for you to "go offline" briefly now for some maintenance so that you can continue to help those that depend on you for years into the future.

Costarica1961 profile image
Costarica1961 in reply to tom67inMA

Very helpful thankyou, are those cooling caps worthwhile or should I just go billiard bald before. I do have mild Nueropothy and I understand there dry ice packs for the feet to minimize further damage. Thankyou

AlanMeyer profile image
AlanMeyer in reply to Costarica1961

As I understand it, ice is used to reduce the amount of circulation to areas of the body that are highly sensitive to the chemo but don't have metastases - hand, feet, tongue, and head. When circulation is reduced, a lower dose of docetaxel reaches these sensitive areas.

In addition to the ice baths, I suggest a cup of ice chips or cubes that you can suck on while the drug is circulating.

As with all the PCa drugs, some people benefit more than others. I hope you're one of the ones that gets great benefit and easy side effects. I also hope you and your grandson can work up a plan to enable him to occupy himself when you're most in need of rest.

Best of luck.

Alan

Costarica1961 profile image
Costarica1961 in reply to AlanMeyer

Thankyou Alan. Very helpful info. Which I will use. Be well fellow warrior.

tom67inMA profile image
tom67inMA in reply to Costarica1961

I didn't ice anything, I just took my shoes off to allow my feet to be a tad cooler. I lost most of my hair, and may have had some mild neuropathy that mostly cleared up by the end of each cycle, and went away completely a couple months after finishing.

I did have some neuropathy like feelings in my toes after starting carboplatin+etoposide, but the doctor recommended taking a B complex which I've been doing and it's been much less of an issue since. I also exercise as much as I can which seems to help (and when I say "as much as I can", it's about 25% of what I was doing 6 months ago)

dougnola profile image
dougnola in reply to tom67inMA

I think Tom covered it pretty well. I had taxotere and carboplatin simultaneously and it generally made me most exhausted about 2 or three days after the infusions. I even traveled for work a lot back then and maintained much of that. I also just needed a lot of naps...often unpredictably so I had to build that into my schedule too. The steroids they gave during The infusion also gave me super energy the day after.

Of course, my immune system was compromised so I was taking special precautions when in crowded places with a face mask and sanitizers. It made me feel conspicuous then and it’s, of course, now the hip “in” thing.

As for my cancer, it did a great job and I’ve been letting ADT do the rest since then...more than three years now. ✌️ DougNOLA

Best wishes!

Costarica1961 profile image
Costarica1961 in reply to dougnola

Thankyou I am glad your experience went so well. Hopefully I can duplicate that

tom67inMA profile image
tom67inMA in reply to dougnola

I had forgotten about the steroids. Loved them! No pain and extra energy for a day or two, then they wore off. I don't get as much of them on my current chemo :-(

Costarica1961 profile image
Costarica1961 in reply to tom67inMA

Is that what happens now, one chemo to another with castrate resistant met cancer. And clinical trials when available. Trust if its successful I'm ok as long as it gives me many more days. Months years.

tom67inMA profile image
tom67inMA in reply to Costarica1961

I may not be the best example to go by as my cancer is of the rare "intraductal carcinoma" variety that only accounts for something like 3% of prostate cancers. My prostate biopsy found that the vast majority of my cancer was in the right half of my prostate. The left half was nearly cancer free, and thus had far less prostate cancer than my left rib.

My Docetaxel treatment was "early chemo", given as soon as possible after diagnosis without waiting for castrate resistance to occur.

I'm currently in chemo for neuroendocrine prostate cancer, which isn't so much castrate resistant as an entirely different type of cancer. My treatment is effectively fighting two separate cancers, with carboplatin + etoposide + atezolizumab aimed at the neuroendocrine cancer, and lupron + abiraterone taking care of the "normal" prostate cancer. My PSA has been <0.1 since January 2019, and was <0.01 when the neuroendocrine cancer was found.

Costarica1961 profile image
Costarica1961

Thankyou I am glad your doing so well. From one bad ass to another.

Costarica1961 profile image
Costarica1961

Thankyou I respect your knowledge and I am sending in a request for it.

Costarica1961 profile image
Costarica1961

Ok I just got off the phone with the pharmacist. She said unfortunately in Oregon where I live it is only available to covid positive folks due the over prescribing that happened early on. She recommended tonic and elderberry and zinc as you mentioned. She said even psychologist were prescribing. Therefore they put a kibosh to it.

MateoBeach profile image
MateoBeach in reply to Costarica1961

Yes. If it does turn out that HCQ does help in treating COVID infection (which is not yet known) that does not automatically mean that it would prevent it (prophylactic)

Rather, you will be protected from getting it by the protective practices of the nurses at the chemo infusion center: Masks, gloves, hand-washing and careful attention to these details. I would not add worries about getting COVID in that setting. Go fight your cancer. Chemo sucks but you must live. It will be tolerable. Probably not as bad as you are imagining.

Costarica1961 profile image
Costarica1961 in reply to MateoBeach

I cannot get this drug anyway due to the large run on my state (oregon)from everybody and their brother. I have heard also of heart problems in some cases. So this is not on my radar now thankyou for your comment

Doseydoe profile image
Doseydoe

I'm 58, Stage 4, GS9 with Mets and have my 5th Docetaxel IV next week. I agree with all the advice given so far. Face the fear and do it anyway as this is your time, you are the priority. Plan to be out of action for the week so make whatever arrangements you need to. Take care brother and look after yourself, cheers DD 😎

Costarica1961 profile image
Costarica1961 in reply to Doseydoe

Ok, I know your right I have never been a stork. Theres nothing to it but to do it. Thankyou

Doseydoe profile image
Doseydoe in reply to Costarica1961

I found that on the day before chemo I was unable to get much sleep because of the steroids. On the day, I needed a lie down in the afternoon but I was able to do most things but sleep, again because of the steroids. The next day was much the same, but the third day without steroids, I became pretty tired and not able to do much. Same for the next day or so. After that I got better and better.

The Docetaxel accumulates in your body and as a result, I am finding I am remaining out of action for longer now. It took me over a week to get back to normal after my last session. Hope my experience helps with your planning, 😎 DD

Buddy1950 profile image
Buddy1950

If gettting Neulasta too, Claratin worked really well as the pain was dramatically reduced. Dr. forgot to mention it, and apologized as he usually does. Also had to take prilosec for last treatments as the acid was not fun. Really though... it is doable, not fun, but you can make it work.

Costarica1961 profile image
Costarica1961 in reply to Buddy1950

Thankyou buddy. How long did it work for you and do you have Mets as well.

Buddy1950 profile image
Buddy1950 in reply to Costarica1961

Had surgery 2 years ago, but never went to undetectable after surgery. Waited with scans to find out where it went.. found in Lungs 6 months ago psa up to 2.1 ...and with Docetaxel and Firmagon ... went to .01 . Got a Lupron 6 month shot, but think Firmagon was actually easier to live with for me. Good luck... this is doable, just don't think you have to tolerate everything as there are things to make this go better.

Buddy1950 profile image
Buddy1950 in reply to Buddy1950

Should say scans are now clear.

Zetabow profile image
Zetabow

When I started Chemo Dec 2018 I was in a bad way PSA was 1386, Mets to Lymph nodes and every bone in my skeleton and it got into the Marrow on both Femurs Hemoglobin was half what if should be and I was in lot of pain.

I tolerated the Chemo well except for first round where I ended up in ER needing transfusions but I think that was because I started off quite poorly. After about 3 days I got mild flu symptoms but nothing to totally take me off my feet, I walked everyday and drank lots of water and herbal teas (min 2 litres a day). It was only the last two infusions I ended up off my feet and in bed for 2-3 days. Fingers and toes were okay, a toenail dropped off about 2 months after Chemo was completed lol

I think it would be good if you had some support, maybe family a charity or social services etc, I would be a little stressed if I had to deal with this alone, you just need a safety net in case you have a bad few days.

Jan the Doc told me the Chemo has stopped working and PSA is on the rise, Radium223 is the next plan, I see the Oncologist tomorrow, I have a feeling (in my bones) the PSA has reached the threshold he was waiting for.

Costarica1961 profile image
Costarica1961 in reply to Zetabow

Wow, what a ugly battle we face, thankyou for your very up close insight.

binati profile image
binati

Been working with several groups in India on Covid 19 but so far no one has generated any reliable info on HCQ which shows that it is effective. Wouldn't take it except under doctors supervision.

Rexwaterbury profile image
Rexwaterbury

Regarding cold caps, I got second-degree burns on my scalp from using Penguin Cold Caps, so I would not recommend. Purchased a migraine cool cap from Amazon which is much safer. As others have said, Ice your hands and feet, and suck ice chips the entire time. I got no peripheral neuropathy in my hands or feet. I do have an autonomic peripheral neuropathy that affects my blood pressure and pulse when I stand up and results in tachycardia and shortness of breath. Chemo also resulted in a permanent anemia with my hg 9.5. So chemotherapy is not without cost. And my result was short-lived. My cancer took off rapidly two months after chemo was completed.

Costarica1961 profile image
Costarica1961 in reply to Rexwaterbury

I actually have a migraine cap in my freezer. What treatment did you do after chemo stopped working. Best to you and your family.

Rexwaterbury profile image
Rexwaterbury in reply to Costarica1961

I am currently being treated with lu 177 and Ac 225 in Heidelberg.

EdBar profile image
EdBar

I had taxotere per CHAARTED almost 5 years ago when I was 56. First round or two were tough but not horrible. It got tougher after round 3 and 4. I worked out of my home office during it but at half speed or less. Took frequent rests during the day. It felt like a bad case of the flu. I also had a substantial Mohs surgery done on my nose during this time to remove a melanoma that was discovered after my first round of chemo. It was a really tough time, my docs had to be extra careful doing an extensive surgery while undergoing chemo.

I stayed away from any waiting rooms and sat in my car until they were ready to see me so they could take me right back to examination or treatment area to avoid getting sick, immune system got whacked. I used 24hr Claritine to help with bone pain from Neulasta - chemo nurse suggestion, it really helped.

Hair loss after round 2, I just shaved it off, probably would be good to do since you can’t get a haircut right now anyways.

For me it caused a lot of fatigue, flu like symptoms, loss of taste, I felt pretty lousy, especially the first week after infusion. Weeks 2/3 I would start feeling better then it was time for the next round.

You might want to get some help with your wife and grandson, no need to be out in public right now with your immune system severely depleted.

Wish you luck, hang tough!

Ed

Costarica1961 profile image
Costarica1961

Thankyou yes my sis coming to help when needed thankyou all of this is ammo and helpful.

WhiteStrat profile image
WhiteStrat

I have completed four rounds of docetaxel and, so far, it hasn't bothered me very much. I'm pretty tired the day after but, by the second day, I fell pretty normal. The day before chemo, I take all of the prescribed steroids and get a good nights sleep. The night after chemo and the next 2 nights, I take all of the prescribed meds plus 2 tylenol and 2 benadryl. I keep my diet very plain for several days after chemo - I only eat baked chicken and potatoes. I find this helps ward off the dreaded chemo-induced diarrhea. By the third or fourth day after chemo, I'm usually back to my normal workout schedule.

I am doing the cold caps through Warrior Caps, a local company here in Ft. Worth, Texas. The worst part for me has been the fact that I have to wear the cap for four hours after chemo is finished. It makes for a long day of having a freezing (-32 degrees celsius) cap on your head but it is working. I haven't lost any noticeable amount of hair.

I've been fighting this cancer since 2011 and my treatment story is similar to a lot of guys on this forum. I'm 56 now and, despite ADT and numerous other meds I've been on, I'm in the best shape of my life. In 2017, I had throat cancer and I can tell you that chemo/radiation combo is horrible. For me, docetaxel has not been bad at all (so far).

Costarica1961 profile image
Costarica1961 in reply to WhiteStrat

You are on the young side like me ,as I have noticed a lot more guys are. Thankyou for sharing all of this is so helpful.

bellyhappy58 profile image
bellyhappy58

I did mine 6 infusions of docetaxel ( once every three weeks) from mid-Aug to Nov 2019. Initially, there were a lot of anxiety and fear. I took abt two to three weeks to prepare myself physically and mentally for it. After all the session, it was not as bad as what everyone said. The most challenging part was the 4th or 5th day after the infusion. It was like bad flu hitting you. After that it got better . Couple of advice:

- Eat light meals

- Have cold pads for your feet and hands (during infusion). It helps to prevent neuropathy.

- Suck on ice cubes during the infusion ( helps to prevent you from losing your taste buds)

- Rest if you must but don't be a couch potato. Get some exercises whenever you could. A simple walk for at least half hour and if possible, get back to doing some workout. I actually attended gym three times a week. Each session lasted one hour. And other days I walked for one hour. Those exercise regime to me was the best 'recovery' for me after every infusion.

- A positive expectation of good certainly helps

- Have faith in GOD...HE is with me and in me all the way. AMEN

God bless you

Costarica1961 profile image
Costarica1961 in reply to bellyhappy58

Thankyou I like the waiting to part its helped me to hear all of your personal experiences big time .

Costarica1961 profile image
Costarica1961

Thankyou my hair is full and nice but hearing you tolerated chemo well is nice. Thankyou this helps so much

Everyone is different. In 2004, at age 57, in a trial, I continued with Lupron and had six months in three six week cycles Taxotere one week and Adrimyacin, the next. The only ice that I used was once ice chips in my mouth. Did not dip fingers in ice nor wore an ice cap. Reason...... Chemotherapy works by flowing through your vascular and lymphatic systems. Ice will cause blood vessels to constrict reducing the flow of chemotherapy drugs to certain parts of the body, stay hydrated with water. If one is dehydrated, blood vessels also contract.

This is me. Please discuss with your medical oncologist. I or others have varying degrees of success. Could ice be the reason? I don’t really know, just suspect...... why, as a rattlesnake victim years ago, ice was used to not only keep the swelling down, but to restrict the flow of blood...... by constricting blood vessels. To me it makes sense..., just like sex is the best cure for headaches, why, sex causes the blood vessels to expand. Headaches are caused by constructed blood vessels in and to the brain....

Good luck and kill the little bastards.

Gourd Dancer

Costarica1961 profile image
Costarica1961

Kill the bastards this is my new montra. Thankyou

PhilipSZacarias profile image
PhilipSZacarias

Hello CostaRica, you certainly have a daunting challenge ahead of you. You have to consider that you must do the chemo for your wife and grandchild, despite the 4-5 month period of difficulty. The hair will grow back. Ask the doctors at the clinic if they provide ice packs for the toes and fingers - they were not comfortable but worked for me. You can make your own with heavy duty latex gloves (fill with water and tie off like a balloon) and bring them to the clinic (wrap hands and ice-in-glove) in towels to slow melting). You also buy inexpensive freezer packs at a pharmacy as well. I took 300 mg of CBD oil on chemo days to reduce the potential of neuropathy, but not sure if this available in your area. Response to chemo varies with the person - oddly enough, the stronger the reaction the better the outcome. The first couple of days are difficult with significant brain fog but you will still be ambulatory. Second two weeks are not too bad. Of course wear a mask and gloves when you go out. Take cannabis to reduce nausea and improve appetite. My thoughts are with you, amigo. Cheers, Phil

Costarica1961 profile image
Costarica1961 in reply to PhilipSZacarias

Daunting indeed although with this amazing input far less now thankyou

PhilipSZacarias profile image
PhilipSZacarias

Hello CostaRica, I neglected to mention that taking loratadine (Claritin, an over the counter antihistamine) during chemo is associated with better outcomes. Search Pubmed with the terms cancer and loratadine. If you can find the references, I will send to your email. Cheers, Phil

Costarica1961 profile image
Costarica1961 in reply to PhilipSZacarias

Thankyou it's on my list, a huge help.

Tak-Druk profile image
Tak-Druk

Hi there... I did docetaxel when I started Lupron in my mid 40's. This is all pretty good sounding advice here based on my experience. I didn't bother with a cold cap. I experimented by putting one hand in ice and the other without because I was curious, but I didn't have any neuropathy in either one. My hair was thinning a bit so I shaved it.

What I remember is feeling like I was coming down with a flu on days two through four or five and it was really helpful for me to have no commitments during that time, and to have my partner help out with needs like cooking and such. I spent a lot of time in bed, watched a lot of movies, and I used marijuana and CBD to help me rest. It would have been hard and really sucked to have to go to work, or to have other responsibilities. Maybe I'm a bit of a wimp in this way compared to some others who have spoken above. I suppose if I absolutely had to be the one to do the caretaking for myself and others I probably could have, but it was really nice not to. I agree with the sentiments of getting very light exercise, like just walking for a 1/2 hour or so. But mostly my body needed rest. It wasn't that I felt horribly sick or weak, I just felt discombobulated.

Good luck. I think you'll be fine. I hope you get some good effects on the cancer from it. I will also offer some of my own perspective as food for thought - please feel free to take what suits you and forget anything that does not serve you: "the bastards" are cells from my own body that have gotten confused. I don't feel like I have to make them into an enemy; I do want to "assist" in the natural process of cell death by killing off the cancer, and at the same time I also want to restore the natural harmony and intelligence of this miraculous organism that supports and manifests my amazing consciousness and spirit. Along with duty and action, this also asks for rest, care, nurturance, relaxation. Survival becomes a noble pursuit if I remain deeply connected to the values for which I am staying alive.

Costarica1961 profile image
Costarica1961 in reply to Tak-Druk

Those are beautiful words to live by. Thankyou

Kevinski65 profile image
Kevinski65

Could this be why the latest studies indicate it doesn't work? Maybe there was no zinc...

Chugach profile image
Chugach

I went in for infusion a week and half ago, I was nervous about going to the hospital with covid going on. It was fine, it was clean and they were talking good precautions as was I.

Regarding the meds. Comparatively to other chemo I’ve had, docetaxel was pretty easy - still no walk on the park, definitely will knock you back for a couple days. Neulasta is not a big deal, I felt fine with it and it is a good drug.

Don’t mess around going for groceries with covid going on , get them delivered or place an order and have them deliver them to your car at pickup.

Stay strong!!!!

PS - just got back from Costa Rica, last commercial flight out of the country before the stopped flights for covid. Love that Country- Pura Vida!!!!

Costarica1961 profile image
Costarica1961 in reply to Chugach

Pura vida !!!! Mi amigo.

ron_bucher profile image
ron_bucher

Every case is different, but my otherwise healthy body tolerated docetaxal very well in 2017 at age 65. My energy level on a 1-10 scale was 11 until a couple days after infusion when it fell off a cliff to 5 Then it increased one point daily until I was back to 9-10 in 5-6 days.

The same thing happened on all 6 cycles.

Lupron was much more difficult for my body.

I never tried ice or cooling. I actually wore hats every day, and gloves while sleeping. My hair thinned but I kept my hairline.

I also had radiation of lymph nodes a few weeks after the chemo, and am still in remission.

Original Dx was Gleason 4+3 in 2006 when I had RP.

Don’t hesitate to ask friends for help. That’s what friends do best!

Costarica1961 profile image
Costarica1961 in reply to ron_bucher

I appreciate your insight

Thankyou

ron_bucher profile image
ron_bucher

Please share scientific sources.

Costarica1961 profile image
Costarica1961

Good morning Nalakrats.

I currently take a half teaspoon of neem powder 3 xs a day with pectasol-c is this ok with my upcoming docetaxal in your opinion. Thankyou

Costarica1961 profile image
Costarica1961

Thankyou organic veda Neem leaf powder a product of india.

jdm3 profile image
jdm3

Hopeful, but unfortunately........

"More than five dozen people with chronic ailments like lupus and rheumatoid arthritis were taking medications such as hydroxychloroquine before being diagnosed with the coronavirus, according to data compiled by the Global Rheumatology Alliance, a coalition of rheumatologists, researchers and patients, and published in a medical journal Thursday.

Meanwhile, about 190 patients with the chronic diseases who were taking hydroxychloroquine reported in surveys to the alliance that they contracted Covid-19. Doctors also say they have treated individuals with coronavirus who were lupus patients taking hydroxychloroquine.

Researchers say the published data and surveys may be small but already show that hydroxychloroquine doesn’t fully protect people from contracting the new virus.

“It’s not a magic bullet because people that are on it are contracting the infection,” said Jinoos Yazdany, chief of the division of rheumatology at Zuckerberg San Francisco General Hospital, who is helping lead the alliance’s research."

wsj.com/articles/hydroxychl...

jdm3 profile image
jdm3

I don’t know what to think about Hydroxychloroquine. Certainly not opposed to it. Just posting what I read. It may be preventative for some, it may decrease severity, but I don’t know.

As for PCa, I was in Africa last winter, and even though we were not in a country with high risk of malaria, I opted to take Plaquenil knowing that might have some benefit against PCa. Every little bit helps.👍

Anyway, I agree let’s focus on PCa here.

Have a good weekend.

R410a profile image
R410a

I used Peguincold caps.. They work and do avoid hair loss. You will need help during and after the infusion to use these things. Insurance does not cover it. You might see if there is a local source. Do wait until the last minute to arrange for these.

Costarica1961 profile image
Costarica1961 in reply to R410a

Thankyou

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