We are seeing our oncologist tomorrow. My husband has edema in both shins, worse on the left side. That's where most of his pain is coming from. Otherwise he is fairly strong, but the pain meds are taking a toll on him.
He's been on zolodex now for 3 months. We have been dealing with stage iv since 2007, so we aren't new at this.
He was taking intermittent ADT for about 4 different periods of time during these 13 years. When he was first on Lupron.. and then did a 6 month round of Zolodex he was much stronger, we were lucky the only side effects was loss of muscle.
Now, after 3 months, this 3rd shot he began pretty bad aching in his lower back 2 days ago. It isn't nerve pain. He does have mets to his L4 and sacrum, also his right hip.
The clue that I think that leads to thinking the Zolodex is causing the back aching, (it's really bad aching) is why I'm asking this question prior to seeing his doctor.
When we first complained many months ago about shin pain his oncologist said it was shin splints, but never touched him. He does have fluid on his shin bones.
He's had spot radiation on L4 that helped for about a year or a little more in 2016. L4 is lighting up again on the MRI. The second spot radiation about 1 1/2 years ago seemed to have done nothing but make things worse. I'm also wondering if there was damage to his lymph nodes that is now causing this from the radiation.
We are at a loss. We have requested an appt with a radiologist at Stanford who was recommended here, but that appt hasn't been set up yet. To complicate matters he needs a right hip replacement. His oncologist said something about needing a specialized surgeon to do this. That's a major decision we have to make.
Since things have opened up with Covid, we are now able to actually see the doctors. Still they don't want me there unless I say he needs help, which I am saying yes to.
Any thoughts mainly about Zolodex side effects causing aching pain in the lower back.
I appreciate any thoughts you may have. Thanks every so much..
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Bluebird11
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If he does have mets to his L4 and sacrum, also his right hip, most probable the pain is caused by the cancer mets. You should consider to consult with his MO about this pain. ADT may cause joint pain (it makes one older) but in his situation with mets in his spine they have to rule out they are not causing the pain.
Our problem is the radiation road. We see no end to it. I think someone said on here that it isn't unusual that after a spot radiation on L4 a year later that it lit up again on a scan. It didn't actually mean it was cancer?? not certain of that. I love our doc.. he is not only a doc but a healer in his demeanor, though the time spent is short.
We will have 3 different radiologist looking at his scans (we hope to get some answers soon) and one surgeon who replaced his hip in 2009. We need to hear their opinions separate from each other.
We so know about 'it makes one older'.. we've been through it.. the loss of so much.. my husband was 55 when diagnosed .. he's turning 69 this September, so we have a lot to be grateful for, and we are. Pain is the game changer.
It really is horrible.
If any one is reading this, upping his meds will also cause us to be really mindful of how to keep the bowels moving. It' something we don't have the luxury of decision. He's not on much actually. He was on 5 oxy, or 1/2 of a 5.. now he's on a full 5 and at night a 10 sometimes.. that's not a lot actually.
I'm rambling. It's such an alone situation. Thank you for taking the time to respond. It really helps. I feel I have a place to go... I used to give back a lot, though these days, I'm pretty exhausted...
Nobody can tell with certainty if there is an active lesion(met) at L4 or not...just based on conventional scans like X rays, CT, bone scan or MRI. Why ? Because all of these scans CAN NOT differentiate between live met or healed scarred met.
These scan only see a lesion and assumes it is live met..which it may not be. My healed mets still appear on scans looking like subtle, faint shadowy spots.
The scans which truly can identify live, active mets are PSMA Gallium 68 or FDG scans ,Axumin etc. They are very expensive in USA.
There is a simpler way to know if a met on bone is active and live is to measure serum Bone Alkaline phosphatase ...if the blood test shows BALP is less than 40, you can safely assume that met on L4 which is shining on MRI is a dead, inactive met..just a scar and nothing more. Besides, if your PSA is very low ,it confirms it even more as active prostate cancer cells can not help but produce PSA....dead cancer cells Can Not produce PSA.
I want to thank everyone for their help and responses. It means a lot to me. Every response makes a lot of sense. We have a lot to consider.
This is a tough disease when it's this stage although we've been at this stage from the beginning.
A lot has changed over the last 13 years, though the consideration is still no cure but palliative. Palliative has extended his life though we have used many avenues combining supplements, alternative and much that one can't imagine.
My wish is for strong health and healing for those here. I am grateful beyond words for your care.
It's a tough game...
When choices get limited then it becomes even more painful.
We have in the works an appointment with the radiologist that Tall Allen and another poster?? recommended at Stanford. We will also meet with a surgical oncologist.
We will see what their independent thoughts are going forward.
Some might think us crazy but we've never been on Xtandi or Zytiga. I know what that may sound like to some, though for us, we have to weigh our beliefs even if it shortens his life.
We have excellent doctors who will listen to who we are. They don't bully us. They are specialists in the prostate field. Luckily we are in an area with a lot of good doctors.
My husband does fly to one specialist so it's not like we've just done our own thing.
We weigh the risks of side effects even if the side effect of not doing many drugs used means a shorter life. That is our choice ... we remain open for changing our minds. As I said we have a lot to think about. We did two spot radiations, had a bone biopsy that was a nightmare. The last radiation was not good. The first gave him about a year or so of relief though it can't be re-radiated and it does light up. His alk phos is pointing to more bone turnover unfortunately.
Thank you again. This is a wonderful cross section of people who have a lot of experience, both personal and professional. My gratitude can't be conveyed.
It's the metastases causing pain, not the Zoladex. Maybe docetaxel or Xofigo can help with the pain.
Pursuing treatments during covid is challenging. You have a good handle on what’s going on. Still ,so many areas of pain... I’m sorry for his suffering...and yours. PLease keep yourself strong .. 🙏
I had no bone pain until 1-2 months ago, and even then I denied that it was related to bone mets. I thought it was simply musculoskeletal pain from a pulled muscle. I sought treatment from a chiropractor and orthopedist that yielded nothing. Finally I went to a pain specialist who did an mri that showed extensive mets in my lumbar spine, and that’s when I believed my pain was from tumor. I am on a fentanyl patch and Vicodin 5 mg 3x per day. I am receiving radiation treatment to my lumbar spine and iliacs. I am finally getting some relief. Opioid induced constipation is awful. Presently I take Colace 2x per day and Miralax every day. I’ve had to use a dulcolax suppository 2-3x. My pain specialist recently prescribed for me a medicine that counteracts opioids in the gut, but nut in the central nervous system. Good luck. PM me if you’d like.
This is very helpful. I will look into the meds you are taking for bowel movements. We are also using Senna in capsule from the health food store. This is gentle and is helping. It's amazing to be so grateful for a BM. We celebrate.
Are you also prescribed a steroid during the radiation. We did this for radiation which helped greatly though in order to get off it we got the greatest advice was to tritrate down on it. What we did was profound since we cut the pill in 1/2, then 1/4, 3 days apart.. then 1/8. When we got to that point we took one pill and put it in a homopathic solution that was simply for the immune system from Natural Partners.
From that point my husband did drops and kept dropping that until he was off. Even then he could still feel the affects. Our oncologist initially prescribed a high dose. Our radiologist immediately lowered it. Dexothione is a tough steroid. I've spoken to wives who reported how difficult it was to get off. Different than prednisone. Often docs just take people off which does cause a lot of difficulty.
We are ready to do a test from Biocept. We don't know much about this but it is for cancer and a test specifically for prostate that can help docs get more information about ones personal type of prostate cancer or markers that could help It is covered by Medicare and needed is supplemental insurance which cuts our cost to about $150, or so. It's a very expensive test that is FDA approved. I wish I knew more of what it tells as far as markers. Just an FYI.
Also, during the radiation we did a few things that helped mitigate skin burn without interfering in the radiation since the radiation continues to work for months afterwards. Unlike taking a scan where we would want to remove the radiation out of the body quickly using detox methods, radiation used for what we are doing needs to continue working.
Many wishes for this giving you relief and killing the cancer in those areas.
I'm in the SF Bay Area about 50 min from Stanford in the East Bay. San Fransisco is a bear to drive to even though it's about 20 min across the Bay Bridge. Getting out of the City is what the problem is. With the commute being what it is and sitting in car it becomes a problem. Traveling south and over to the Peninsula is so much easier.
There's an interesting side effect to driving in SF. I begin to experience road rage which is foreign to me which tells me a lot about who is sitting in their cars.
A little aside story. My mother, who was on the East Coast CT.. stopped driving at 90 and was very sad about that. I'd say MOM... driving is different these days, you just don't want to be on the road today with all the crazy drivers...
Thanks for your kindness. What becomes integral and relevant are not things any longer... it's truly the human connection.
I can sympathise with your frustration about driving in the Bay area.... I live in New York City. A completed Grade A course in Road rage is mandatory here otherwise you're denied a driving license. I have to give your Mom a medal for driving at 90... hopefully she's doing ok in Connecticut. Human connection? What's that? People keep telling me to get used to the "new normal"...
Here goes: I am the type of person who helps people in need. I can tell you about so many incidents while helping foreign tourist here in NYC. But why bore you.
Could you and your husband stay with your Mom in Ct. and get an appointment with a good MO or RO at Memorial Sloan Kettering? Great hospital for Ca. Well take care and keep posting (we need more people like you)...
I went to a fashion design school upstairs from Birdland back in the early 60s.. between 51st and 52nd .. broadway front side... 7th ave back side of the building... ave of the americas... remember...
I haven't been there in 5 years since our situation stepped up..
I did notice it is far more crowded ... I was shocked..
I would never attempt to drive in NYC.. I used to drive a '71 vw bus on the hills of SF that was bad enough, but I was young and brave..
My mom has died.. thank god.. she was in a nursing home.. now she is free as a bird..
I'm tired.. we've thought about living bi-coastal, but with the cost of everything...
You can't beat the weather here, if that's important.. we have family back East but that's a double edged sword in these days...
We have Stanford and UCSF... Then a great prostate oncologist specialist in his own group..
I could post with you for hours..... but I don't want to tie up the people who need medical advice. As far as SF is concerned I've been trying to move there for about 3-4 years (weather is a factor). So I know the city and surrounding area fairly well. I guess you know about FIT.
You know I love humor.... well recently I sent this so a member about the garment center in NYC (I'm sure you remember that),
A woman is walking home from work in the garment district late at night when suddenly this guy jumps out from a dark alley and opens his raincoat and flashes her. She looks at him and says "you call that a lining?"....
May your mom keep driving in heaven and thank goodness you stopped driving the 71 bus
up and down the SF hills otherwise you'd be racing your Mom now. Take care/regards.
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