Elgie's cancer is back

[erjlg3]

Hi My Friends

I hope this finds everyone having a nice Sunday or whatever day it may be for you reading this. Elgie had a CT scan and a bone scan last week. Dr. Myers called us with the results. Cancer is back in the right clavicle. One lesion. The great thing is nothing showed up anywhere else! He is sending Elgie a blood test kit to have this Guardant...? test done. He said it will help him to decide which course of action to take to treat this area. He said he was on the fence about how he wanted to attack it. Radiation or Taxotere are the 2 choices at the moment. We will have another phone consult after the lab results get back. Any questions we should be asking? Any input is always appreciated I've seen quite a few of you on Taxotere or writing about it lately. Always my very best wishes and my prayers for each of you.

Huge hugs,

Jackie

I copied the results. Here they are.

Narrative

NM BONE SCAN WHOLE BODY

CLINICAL HISTORY: Prostate cancer.

TECHNIQUE:

Scan Region: Whole-body

Injected Dose: 23.6 mCi Tc-99m MDP

FINDINGS:

COMPARISON: Prior bone scan imaging from July 7, 2011.

CORRELATION: The visualized osseous structures from CT imaging dated July 12, 2017

Osseous structures: There is moderate activity seen involving the medial head of the RIGHT clavicle and probably both sides of the RIGHT sternoclavicular joint. This correlates with sclerosis involving the medial head of the clavicle on the recent CT imaging. Of note, the sclerosis is new when compared to a prior chest CT from August 20, 2014. This is nonspecific but close follow-up is advised.

There is otherwise mild degenerative type uptake at the junction of the manubrium and body of the sternum which is unchanged. Degenerative type activity is noted in the cervical spine and unchanged. Multilevel degenerative type uptake is also noted in the lumbar spine with an associated lumbar scoliosis.

Degenerative type uptake is partially visible in the hands and without gross change. Faint activity is suspected in the RIGHT iliac bone adjacent to the SI joint which does correlate with some subtle sclerosis in this region on the recent CT imaging.

Other findings: Soft tissue contours are unremarkable. Both kidneys are visualized.

Impression

1. New uptake involving the medial head of the RIGHT clavicle which may be related to the sternoclavicular joint but close follow-up is advised as it correlates with sclerosis on CT imaging.

2. Slight uptake in the RIGHT iliac bone adjacent to the SI joint correlating with a sclerotic lesion in this area.

3. Additional foci of suspected degenerative change as discussed.

[Jay10]

Sorry to hear of this setback Jackie. Sending you my best wishes.

Jackie xx

[erjlg3 in reply to Jay10]

Thank you Jackie. I hope you're finding some peace and some smiles.

Hugs.

[YostConner]

Jackie, sorry I can't remember. Has he already used Xtandi or Zytiga?

[erjlg3 in reply to YostConner]

Hi Yost!

He tried Xtandi back when they thought it was in his bone barrow and shoulder about 6 months or more ago. Xtandi was horrible for him. He never tried Zytiga. Should that be one of our questions? Perhaps it WAS cancer back then in the shoulder....hmmmm....

[Darryl Partner in reply to erjlg3]

Yes ask about Zytiga with ADT

[erjlg3 in reply to Darryl]

I'll add it to my list of questions. Thanks Darryl and YOST

[Hidden]

Hi Jackie, Also sorry to hear of this setback. I am surprised to see that hubby's bone scan was done using old technology, i.e., Tc-99m. This is first generation technology. Even second generation technology of NaF18 PET scan is now considered not as accurate as such 3rd generation scans as C11-choline and even the more recently approved Axumin. I agree with other comments that Zytiga/prednisone may be more tolerable than Xtandi. It typically causes less fatigue. Taxotere is certainly an option, provided he doesn't already have any peripheral neuropathy. If he does, just know that the neuropathy would likely get worse with taxotere. Wishing you much good luck.

Len

[erjlg3 in reply to Hidden]

Hi Len!

Hope you're doing really good.

We also inquired about the type of scan being used. Doc said If LG got the F18 scan that insurance may not pay for him to get the Axumin and he wants him to get that depending on......I can't remember He had about a week of minor neuropathy but it hasn't returned. Thanks so very much for your input Len. Always good wishes for you

Jackie

[E2-Guy in reply to erjlg3]

Hi Jackie, I recently had the 68Ga-PSMA/CT preformed in Melbourne, AU and was of the belief that it is essentially as valid as the F-18 scan with PSA's > 0.7. I believe that the F-18 and the Axumin are the same scan..would someone please correct me if I'm wrong?

"Axumin™ (fluciclovine F 18) injection is indicated for positron emission tomography (PET) imaging in men with suspected prostate cancer recurrence based on elevated blood prostate specific antigen (PSA) levels following prior treatment."

[erjlg3 in reply to E2-Guy]

Thank you Ron! We'll see what scan is next and we'll ask more questions How did it go for You? Are you doin n well?

Jackie

[E2-Guy in reply to erjlg3]

Hi Jackie. The 68Ga scan identified three lymph node lesions along my sacral vertebrae. I am going to have robotic surgery in August at UCI to have them and any other specious looking ones removed. Only time will tell if the procedure is worthwhile.

[erjlg3 in reply to E2-Guy]

Wow....I did not know they could be removed! I will wish and hope and pray that it goes perfectly ron! Keep us posted please

[E2-Guy in reply to erjlg3]

Hi Jackie, Thank you! They did remove some suspect LN's in the prostate-bed area when I had my robotic RP performed 12½ years ago.

[ctarleton]

Here's more info on the Guardant genetic testing.

guardanthealth.com/

Charles

[erjlg3 in reply to ctarleton]

Thank you so very much Charles! I hope you're doing good and keeping the PSA at a fairly low number.

[Hidden]

Sorry to hear about your setback Jackie. I think you are making the right move to have the genetic testing done. The more you know about the cancer, the better you can target the treatment. You are in our thoughts and prayers always.

[erjlg3 in reply to Hidden]

Thank you for that information Gregg because I haven't done any research and did not know it was genetic testing. I was just about ready to read the link that Charles sent me after I replied here. Thank you so much for your thoughts and prayers....as always each of you are always in mine

[bhammel]

Hi Jackie; all the best and prayers to you two. Finally got my pain controlled with oxycotin; tried not to go that far but had to. Initial comments for Elgie seem hopeful. I am still catching up on current research and thinking but feel that something groundbreaking is due soon. In the meantime I have plenty of time to pray. Always thinking of you two.

[erjlg3 in reply to bhammel]

Hi Bill!

I am so glad that you were able to get your pain under control. Sometimes that can be the most difficult thing. Don't feel bad about taking that Bill.. whatever it takes to survive and live without pain. Elgie flunked oxycontin 101 but i can't remember how lol. You must be quite bored with the grand kids out of school I'm glad you are doing research and I hope and pray you're feeling better without that bad pain. Big hugs,

Jackie

[Neal-Snyder]

Jackie,

I had a Sunday without internet until now, just before bed. I'm sorry about the new lesion. But I'm glad it's just 1, glad you've still got Snuffy (he's retiring real soon, right?), & glad you're getting good info from people here. Please keep us posted.

I wish you & Elgie all the best of fortune.

Neal

[erjlg3 in reply to Neal-Snyder]

Hi Neal!

I too have been having Internet issues since our storm last week. Yes Snuffy is retiring in October He deserves to retire and have some happiness and to take a break from helping to save some of the wonderful men of the world. Let's just hope There will be many more doctors who will be able to help as many men and more.

I hope you're having a good day Neal with no pain. Always my good wishes for you.

Big hug,

Jackie

[Sisira]

Bless you with the STAMPEDE and CHAARTED.

Sisira

[erjlg3 in reply to Sisira]

Bless you Sisira

I hope you are doing well today.

Hugs,

Jackie

[motosue]

Hi Jackie,

Sorry to hear the news.

Don't you see Schultz too?

I took chemo and radiation immediately after diagnosis. Still taking Lupron, Zytiga and Xtandi. So far it's been a great recipe for me, knock on wood.

Did LG take chemo before?

How's LG's tolerance to chemo if he did?

I am glad that he"s in good hands.

Wilfred

[erjlg3]

Hi Wilfred!!!

I've been thinking about you and wondering if you were well and enjoying life and it sounds like you are! that is absolutely wonderful Wilfred! I hope and wish and pray that will continue for a very long lifetime

LG c's doctor Myers but he is retiring and he referred us to Doctor oyer at our local cancer center. We tried to get him before but he was not accepting new patients. Elgie has never had chemo. He has had Eligard, Trelstar now, Finesteride now, casodex now, Radiation 2 rounds, Xofigo and Xtandi which was absolutely horrible for him and for me and had to stop.

He did not ever see Dr. Schultz.

Always great to hear from you Take good care of you and we will do the same.

Big hugs,

Jackie

[Dan59]

Jackie, I agree with others on Zytiga /prednisone being the lesser toxic . I am curious what the radiation would include, to the single alledged met he has , and done by Dr Myers radiation team in Florida to irridate that single spot. I myself have never had a clean bone scan, In my case I question if what they think they see is actually cancer or degenerative bone disease, I do not think they know without a biopsy. A repeat scan after a little time will tell if they are the same or changed, Is his psa increasing too, How does his alk phos look and his other Labs. Chemo is his choice as well if he is feeling up to it, I would do whatever the Dr Myers suggest.

II wish You and Elgie the best.

[erjlg3 in reply to Dan59]

Glucose (serum) 99 mg/dL 65 - 100 mg/dL

Blood Urea Nitrogen 34 mg/dL 8 - 23 mg/dL H

Sodium 136 mmol/L 135 - 145 mmol/L

Potassium 4.3 mmol/L 3.4 - 5.3 mmol/L

Chloride 94 mmol/L 98 - 107 mmol/L L

CO2 Venous 37.0 mmol/L 21.0 - 31.0 mmol/L H

Anion Gap 5 mmol/L 5 - 15 mmol/L

Creatinine 1.2 mg/dL 0.7 - 1.2 mg/dL

BUN/Creatinine Ratio 28 Ratio 10 - 20 Ratio H

Osmolality Calculation (serum) 280 mosm/kg H2O 275 - 300 mosm/kg H2O

Calcium 9.4 mg/dL 8.6 - 10.3 mg/dL

GFR 57 mL/min/1.73 sqm mL/min/1.73 sqm A

Glucose (serum) 91 mg/dL 65 - 100 mg/dL

Blood Urea Nitrogen 31 mg/dL 8 - 23 mg/dL H

Sodium 137 mmol/L 135 - 145 mmol/L

Potassium 4.7 mmol/L 3.4 - 5.3 mmol/L

Chloride 100 mmol/L 98 - 107 mmol/L

CO2 Venous 33.0 mmol/L 21.0 - 31.0 mmol/L H

Anion Gap 4 mmol/L 5 - 15 mmol/L L

Creatinine 1.3 mg/dL 0.7 - 1.2 mg/dL H

BUN/Creatinine Ratio 24 Ratio 10 - 20 Ratio H

Osmolality Calculation (serum) 280 mosm/kg H2O 275 - 300 mosm/kg H2O

Calcium 9.5 mg/dL 8.6 - 10.3 mg/dL

Protein Total Serum 6.7 g/dL 5.6 - 7.9 g/dL

Albumin 4.2 g/dL 3.5 - 4.9 g/dL

Result reflects use of Bromocresol Green Methodology.

Bilirubin Total 0.6 mg/dL 0.2 - 1.2 mg/dL

Alkaline Phosphatase 71 U/L 34 - 104 U/L

AST (SGOT) 29 U/L 13 - 40 U/L

ALT (SGPT) 28 U/L 7 - 52 U/L

A/G Ratio 1.7 Ratio 1.0 - 2.0 Ratio

Globulin 2.5 gm/dL gm/dL

GFR 56 mL/min/1.73 sqm mL/min/1.73 sqm A

Notes for GFR:

This all happened last year if anyone remembers. That is when they started Elgie on the Xtandi...which he did not handle that well at all. This has me wondering if this is happ

[erjlg3 in reply to erjlg3]

Hi Dan, I've been trying to also write you a note and it keeps getting deleted. My pc is losing it's mind along with me lol

So as I was trying to type.....you're all such an amazing set of brains and you all, always give us so much to think about and question. I am not well versed in the doctor department. Although my friends do call me Doctor Quack Jack lol. Really I can not read labs! I tried to get to his July labs but can't open them. I will continue to try. I hope it's okay that I put them on here. Thank you Dan! Elgie is so thin anyway and I fear for him not tolerating it and losing so much more weight.

I sure hope you will gain some of your energy back soon. Perhaps you will day by day. I also hope you will feel better soon!

Big hugs,

Jackie

[Dan59 in reply to erjlg3]

Thanks Jackie , I have been feeling a lot better for a few days now.

[erjlg3 in reply to Dan59]

That makes me smile Dan I'm so glad. Keep up the good work on keeping you well

[maack1]

Hello Jackie, I haven't been following this website very regularly but still available directly. It would appear that a biopsy could determine if actual metastasis and if so and isolated, targeted radiation with Cyberknife or other targeting radiation. Someone else here asked about LG's PSA activity in view of this appearing sclerotic activity. If stable with current Trelstar/bicalutamide/finasteride it would appear any cancer cell activity is very low. If elevation is noted as well as if the clavicle activity is found by biopsy to be metastasis, a switch from finasteride to dutasteride/Avodart along with consideration for addition of abiraterone/Zytiga accompanied by either one 5mg Prednisone or one 0.5 Dexamethasone daily could be considered. Certainly discuss with Snuffy/Dr. Myers as another way to avoid chemotherapy until absolutely necessary. Zytiga should entirely shut down all production of testosterone from the three sources of testicular, adrenal glands, and that testosterone prostate cancer cells can produce within themselves. Xtandi/enzalutamide has a different action of hopefully closing off all androgen receptors on cancer cells from androgen (testosterone) access. After almost six years Zytiga accompanied by Lupron and Avodart has been indicating failure so recently stopped Zytiga and moved to Xtandi with no noticeable side effects. For me Xtandi has been a blessing both that it does not require daily prednisone (or in my choice dexamethasone) to accompany, and best of all can be arranged for a same time every day with or without food. If it does come down to chemotherapy with docetaxel/Taxotere, I'll send you a separate, direct email that explains what to anticipate as to side effects and how to manage them. On a personal note, you have been an excellent caregiver to your LG and deserve all the hugs and kisses sent your way.

[erjlg3 in reply to maack1]

HI CHUCK!!!

Well aren't you a site for sore eyes! I got lost and you found me ;))) I'm so sure I would have found my way back to you ;)) They did a biopsy last year of the same area and said they didn't weren't able to get any cancer cells. I'm/We're wondering if this could be the same thing as before and possibly be nothing. His psa has stayed undetectable for years. I think 0.05. We definitely have so much to sift through, read, absorb and consider. I do not have the smarts of all of you or even one of you I so much rely on all of your brains together to help me help Elgie and look.......he's still here and it's been almost 14 years! I LOVE YOU ALL!! Now if only you all would make the decision for us lolol. Just kidding But it is all so confusing when we're back where we were last year and went through soooo much terror. Well here I go to re:charge my brain for the night. Sweetest of dreams to you dear Chuck and each and every one of you....whether your lurkers, helpers, big brains, little brains.....like myself I wish and hope and pray you all rest so peacefully. Thank you ALL.

Most sincere,

Jackie