Unfortunate News precipitated by rare... - Advanced Prostate...

Advanced Prostate Cancer

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Unfortunate News precipitated by rare side effect of Docetaxl

doklam2017 profile image
74 Replies

Hi, I am writing here on behalf of my father, @Dokalam2017 who was very active on this forum. He was diagnosed with Stage 4 Prostate cancer in June 2020 and started ADT (Arbiraterone + Degarelix (monthly) + Denosumab (Quarterly)) soon after. His cancer became Castration Resistant starting May 2021 (PSA doubling time around a month) and he insisted starting chemotherapy soon. He started chemo with Docequalip on Sept 28, 2021 with 9 cycles planned until Jan 18, 2022 (one cycle every two weeks; stopped Arbiraterone and continuing with Dega and Denusumab as before).

In end of November post 5 cycles of chemo he developed breathlessness and cough (perhaps infection, perhaps induced by chemo; unclear), but Chemo continued. His oncologist attributed the cough and breathlessness to mild flu like infection and chemo side effects. Post 6th cycle PSMA pet scan showed mild plueral effusion in lungs indicative of infection, but oncologist IGNORED these signs and went ahead with 2 more cycles of chemo. On Jan 4, 2021, he received his 8th cycle of chemo and soon after breathlessness increased and blood oxygen saturation levels started dropping. Saturation levels dropped to about 91-92 at rest and further upon exertion. He was taken to emergency on Jan 6th where a lung x-ray was conducted and he was diagnosed with Non-specific interstitial pneumonitis (NSIP) - perhaps ILD (interstitial lung disease) induced by chemo, and he was started on 40mg soluble medrol (methyl prednisolone) via infusion for 5 days.

Unfortunately, his condition deteriorated further and he became dependent on supplemental oxygen and he was admitted to ICU on 13th Jan 2022. When admitted, he was on continuous oxygen support at 10L-13L maintaining 95% oxygen saturation, further reducing upon exertion.

He was then given three pulse doses of steroid (500 mg via infusion) on 14th, 15th, 16th Jan 2022, but did not improve. His condition further deteriorated and he was put on NIV (non-invasive ventilator), intermittent with supplemental oxygen, which limited his ability to eat, leading to further weakness. The oxygen saturation level kept reducing, and his respiratory distress and pain kept increasing. During this time, he was also administered with tocilizumab (a drug given to patients experiencing respiratory failure following covid) and septran (a strong antibiotic) and ganciclovir (anti-viral drug), none of which helped him.

Finally, on 26th January, 2022 he requested to be shifted on invasive ventilator because of unbearable respiratory distress. He remained on mechanical ventilator until Feb 4th 2022 when he passed on owing to septic shock and cardiac arrest. Being a thorough military man, he remained optimistic and in charge until the end and fought with every fibre of his being. We are extremely proud of the life he lived, his contributions to the army and the precious times we had with him.

We are writing this note to forewarn those who may consider docetaxl and its derivatives for chemotherapy as it can have rare but serious side effects. Please be informed and exercise caution and mention any side effects to your doctor and INSIST THEY CONDUCT A CLINICAL INVESTIGATION of your side effects. We cannot bring our father back but can try to save more lives going forward.

If any of you have had any similar experiences, please do share with us

Thanks

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doklam2017
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74 Replies

So very sorry.

Metaldraft profile image
Metaldraft in reply to

There’s no doubt of true loyalty you have chosen to spread your dedication you put forward for him.My heart and strength go to you which you will put forward when you arrive at that time in which we all have realize .True fathers .. true sons.

Thanks for being there …..I’m deeply sorry!

doklam2017 profile image
doklam2017 in reply to

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

Darryl profile image
DarrylPartner

Condolences. Thank you for making this post .

doklam2017 profile image
doklam2017 in reply to Darryl

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

Gearhead profile image
Gearhead

Thank you for taking the time, while you are grieving, to prepare this sad but comprehensive report for us. I'm sure that many of us appreciate the details you've provided, and we're alert to your cautionary statement. Your dad sounds like the kind of guy we would all respect.

doklam2017 profile image
doklam2017 in reply to Gearhead

Thank you so much for appreciating our post. He was such a pillar of strength even during his suffering.. I know this community meant a lot to him and it is great to know that you are thinking of him..

Spyder54 profile image
Spyder54

Our deepest sympathies for you and your Family. Thank you for sharing. Many men talk of their side effects with Docetaxel. Most having 6 doses approx 3 weeks apart. Some have no side effects, while others have to stop before all 6 completed. I have not heard of these lung complications, but Thank you for sharing. I will keep this as part of my education of this hideous disease.

Peace,

Mike

doklam2017 profile image
doklam2017 in reply to Spyder54

Yes, it does seem like the effects of chemo differ widely depending on one's genetic makeup and lifestyle.. he was physically very fit and it was very strange that he had such an adverse reaction to the chemo.

Thank you for your kind words.

meowlicious99 profile image
meowlicious99

Thank you! Hoping for peace for your father’s next journey

doklam2017 profile image
doklam2017 in reply to meowlicious99

Thank you for your kind words.

Kaliber profile image
Kaliber

My deepest heartfelt condolences. ❤️❤️❤️

doklam2017 profile image
doklam2017 in reply to Kaliber

Thank you for your kind words.

Grumpyswife profile image
Grumpyswife

I am sorry for the loss of your father and another warrior and member here.

Thank you so much for posting this as my husband will soon start chemo. Reading this reinforces the risks involved and will make me more vigilant in watching for complications.

doklam2017 profile image
doklam2017 in reply to Grumpyswife

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

dorke profile image
dorke

😢

noirhole profile image
noirhole

Sorry to hear of your loss. Your post is a good reminder for all of us to challenge our health care teams when we feel something is wrong.

doklam2017 profile image
doklam2017 in reply to noirhole

Yes - that is exactly the point of this post.

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

hopeful1956 profile image
hopeful1956

Heartfelt condolences. :(

addicted2cycling profile image
addicted2cycling

;,0(

Javelin18 profile image
Javelin18

Condolences for your loss. I can hear the love for your father in every word.

doklam2017 profile image
doklam2017 in reply to Javelin18

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

NickJoy profile image
NickJoy

Thank you so much for providing us with this information so that we can be fully aware of the possible consequences of chemotherapy. It is very, very good of you to do so at this difficult time for your family. My sincere condolences to you for the loss of such a good man.

doklam2017 profile image
doklam2017 in reply to NickJoy

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

j-o-h-n profile image
j-o-h-n

I wish to salute a fine Military Officer and a Gentleman. May he rest in Peace...

youtube.com/watch?v=Bfe4Txv...

j-o-h-n Wednesday 02/16/2022 12:43 PM EST

in reply to j-o-h-n

Thanks j-o-h-n ! Appropriate 🇺🇸💔

doklam2017 profile image
doklam2017 in reply to j-o-h-n

Thank you so much for this fitting tribute. He was a very brave soldier who always put nation first.

I know this community meant a lot to him and it is great to know that you are thinking of him..

Two-oceans profile image
Two-oceans

So sorry for your loss and thanks for this information. I just had my sixth round of Docetaxel and I told my oncologist it will be the last. Side effects are getting worse and new ones coming up with each session

doklam2017 profile image
doklam2017 in reply to Two-oceans

It is great that you stood your ground and insisted your oncologist cease treatment. I think my father reposed his faith in the oncologist and did not challenge her treatment plan

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

CAMPSOUPS profile image
CAMPSOUPS

So very sorry. Kind of you to let us know. I hope your sorrow fades into the good memories of your father.

doklam2017 profile image
doklam2017 in reply to CAMPSOUPS

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

lcfcpolo profile image
lcfcpolo

I am so sorry for your loss. My condolences to all of your family. Your father always came across as a true gentleman in his writing. You are all in my prayers.Graham

doklam2017 profile image
doklam2017 in reply to lcfcpolo

Thank you so much - it is nice to hear from someone who interacted with him on this forum. I know this community meant a lot to him and it is great to know that you are thinking of him..

Do reach out if you want to talk..

ARIES29 profile image
ARIES29

Sorry for your loss & he was obviously a great man & fighter of this disease. It is a reminder to us all to be vigilant with our medications.

doklam2017 profile image
doklam2017 in reply to ARIES29

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

It was a hard fought battle . Love is eternal and so is your bond! Thanks for sharing a great man’s story . May he Rest In Peace forevermore! 🙏

doklam2017 profile image
doklam2017 in reply to

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

IMHO all pc treatments are poisonous to us . Like Russian roulette of sorts . There is no rhyme or reason as to who survives any treatment . Thank you for sharing . Seeing such love helps me and others . We represent our fathers .In you he did well! 💔🙏

doklam2017 profile image
doklam2017 in reply to

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

in reply to doklam2017

🙏❤️We are all heading in the same direction . Over the falls . Some ahead of others . In the end there is mercy and peace for all . The pooch pic has character !

Sunlight12 profile image
Sunlight12

Hi Doklam's Child,

I'm so very sorry to hear about your father. Your story is heartbreaking. Thank you for taking the time to share it in order to help others. Your father sounds like an incredible man: brave, strong and a fighter! Even if right now it doesn't feel like you did enough, please know that you did a wonderful thing by being there for and with him, fighting at his side. Many of us here - too many! - have been through similar experiences to yours. The pain never goes away, but it does lighten a bit, int time. Sending you love, strength and wishes for peace for you and your family.

In solidarity,

Sunlight

doklam2017 profile image
doklam2017 in reply to Sunlight12

I do hope that our post helps more people in the future...

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

Fight11 profile image
Fight11

I’m so very sorry for your loss! My deepest condolences to you and your family. Thank you for sharing your Dad’s story at such a difficult time!! May he Rest In Peace !!! 💙💙

doklam2017 profile image
doklam2017 in reply to Fight11

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

Schwah profile image
Schwah

Chemo drugs weaken our immune systemWhich is why so many doctors prescribe Neulasta after chemo to increase our white blood cells to help prevent infection. Did your dr not give him Neulasta? Even after he was having issues ? If not that’s shocking to me.

Schwah

doklam2017 profile image
doklam2017 in reply to Schwah

Thank you for sharing your experiences....he was not prescribed any immunity enhancing medications..

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

Costarica1961 profile image
Costarica1961

Very sorry for your loss, i am a big advocate of your fathers way, staying in charge of your destiny, as much as you can. This is sad sad news. Its never easy losing your pops.

doklam2017 profile image
doklam2017 in reply to Costarica1961

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

spw1 profile image
spw1

So very sorry for your loss. Heartfelt condolences. I am particularly scared to read this as my husband, diagnosed at the same sort of time, is poised to start chemo in early March. Thank you for the warning.

doklam2017 profile image
doklam2017 in reply to spw1

Thank you so much. I know this community meant a lot to him and it is great to know that you are thinking of him..

Wish good luck to your husband in his fight

Newyork6264 profile image
Newyork6264

So sorry for your loss. May he Rest In Peace.

Rolphs profile image
Rolphs

Sorry for your loss. You have done a service to the PC community by warning us to look out for dangerous side effects of Docetaxl. So many of us will be on this at some time or other in their cancer fight. Prayers to you and your family.

JD-guy profile image
JD-guy

Our condolences, chemo is tough stuff on a good day. Coming out of chemo is just as tough. I try to remind myself that each day is a gift from God! My life is in his hands. We do all we can to fight the beast, but it is one day at a time.

Cooolone profile image
Cooolone

Condolences and sorrow for your loss!

wagscure259 profile image
wagscure259

So very sorry for your loss. Thank you for your your informative post in the midst of your loss. Your sharing this may in fact save a life one day of one of the brothers on this forum; so grateful for that. Praying for your and your family’s peace and comfort

MMK-XFuture profile image
MMK-XFuture

Very sorry for your loss. It must have been very difficult for you to post this very detailed outline of his last few days. Thank you for sharing. May your father rest in peace.

Jp2sea profile image
Jp2sea

Very sorry.

ChuckBandChar profile image
ChuckBandChar

I’m so sorry for your loss. Thank you for reaching out to us during this difficult time to let us know what happened. It is very helpful.

dadzone43 profile image
dadzone43

So sorry. Your post may save future lives. I hope that the pain you bear lasts only as long as you need it.

ann1919 profile image
ann1919

My deepest sympathy. Thank you for sharing

Tonwantonga profile image
Tonwantonga

my condolences. thank you for the post, it will help others.

MateoBeach profile image
MateoBeach

So sorry for your loss Doclam’s child. I salute and namaskar to you brave father. And take your caution about chemo to heart.

Frigataflyer profile image
Frigataflyer

Thank you for taking the time to write this at this difficult time. I am on Docetaxel and thanks to you I have been alerted.

RusLand profile image
RusLand

I join all the words of condolences to your grief, said above! And I want to add that you are a worthy continuation of your father, that you also selflessly continue to serve people! And as a combat officer, I put my hand to my head standing up and salute the Soldier the way real warriors are escorted to their last journey! Bright memory to your father, and may the eternal love of the Almighty be with him, as they say in Russia!

joeguy profile image
joeguy

So sorry for your loss. I also lost my father to chemo......... it seems to take almost as many as the cancer itself.

dmt1121 profile image
dmt1121

I very sorry fo the loss of your dad. It illustrates the singlemindedness of some doctors. It may be that your dad had another underlying condition that needed to be diagnosed and treated before continuing chemotherapy, but this sounds like it was not even considered. In my experience, adverse side effects and/or other health conditions will give an oncologist pause and they will interrupt or reduce treatments until other health issues are resolved.

It is easy to have total faith in our oncologist, as the primary care giver in this case, because they are doctor who is charged with saving our life. However, they can become myopic and develop tunnel vision.

For all of us who think their doctor is the only expert for their treatment, I urge seeking out a second opinion when the situation is not going well. That might just mean they are not listening to your concerns or that the your condition is worsening and not improving. The worst that can happen is that you find out your doctor is on the right path and a perfect fit. You may also find out that there are other treatments that are better for you.

The one other thing I would add is that we all need to keep seeing our primary care physician. They monitor our general health and may see things differently and run tests to confirm or reject other potential underlying conditions.

doklam2017, there is nothing you could have done to convince your dad to take another path when the doctor is not listening. As you said , he had great faith in his recovery and he has a strong military man who was used to following leaders. His oncologist was his leader in his fight against PCa. We can only try to lead them and encourage them to consider other options but we cannot force them against their will.

We are with you in your grief for the loss of your father, who you obviously loved very much. I hope that you can find joy again in your life, as your dad would want for you.

Gods peace you you and yours..

cancerfox profile image
cancerfox

Thank you for the timely information. Our love and support will always be here for you.

💔

JJUl profile image
JJUl

I read this and could not help relating it to a very similar experience my husband(Peter) had. The scenario you portray played out when he was on Doxetaxel. He had become unwell & needed to be taken to hospital after each time having his chemo. Various infections and serious high temps, low blood counts etc. But he then developed breathlessness and extreme fatigue which turned out was cystic pneumonia. He had been given chemo no.5 when displaying mild flu like symptoms. This had then led to the worsening of his symptoms and he was hospitalised for 6weeks while the oncology team dealt with his deteriorating health. It was touch and go for a bit but he pulled through and had no more doxetaxel since 5th dose instead went onto Xtandi. He also develop DVTs in legs and had to go on blood thinners and became type 2 diabetic from huge doses of steriods. But grateful he is stl with us. So sorry for your loss and what your father had to go through. Treatment can be brutal. The toll it has taken on Peter's health is dramatic.

Azores1 profile image
Azores1

So very sorry. Thank you.

Jeremiad53 profile image
Jeremiad53

Thank you for the report. It must have been hard, but you were a good "soldier" like your Father and a good son for hanging with him, and having the sand to post this in your time of sadness.

garyjp9 profile image
garyjp9

Thank you for your post. My deepest sympathies to you and your father.

Blueslover profile image
Blueslover

So very sorry to hear

GeorgeGlass profile image
GeorgeGlass

Very sad news about your Dad. That's a terrible series of events :(

What is a clinical investigation? I had doctor's kill my Dad, and I had a doctor botch my radiation treatment, and a doctor gave me Levofloxin unnecessarily a couple years ago. When I complained and tried to illustrate the many destructive side effects of Levofloxin, the doctor and clinic gaslighted and basically blew me off.

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