chemo pain advice

[Sunnysailor]

Hi everyone- my husband had is first infusion of Taxotere last Thursday and it’s been really rough on him. He had steroids and as soon as those wore off the pain started. He’s on triplet therapy. Stage 4 with Mets.

First he had hiccups for 36-48 straight and now getting on and off.

Joint and what he is calling bone pain. He had no pain going into chemo. He also has stomach pain. No fever or vomiting. Constipated and working on that with Miralax.

I called the oncology infusion nurse and then the doctors (oncologist) office called back to schedule an appointment in 4 days!?!? I’m going to call them back.

He’s not a complainer and a pretty tough guy.

Any advice on what to ask for. I think it’s ridiculous they don’t send you home with a prescription for pain. He got one for Zofran.

It’s not like these guys don’t have enough obstacles to face. Rant over. I got him a medical MJ card but the doctor said he didn’t want him using it. He’s a pretty hardcore oncologist. Wants him to eat plant based as much as possible too.

I gave him a Tylenol yesterday and it didn’t help. I gave him one Claritin and it didn’t help. I’m at a loss on how to help him. I do have some old loratab from a surgery in 2020.

Appreciate your support.

[Tall_Allen]

An infusion of a liter of normal saline within a couple of days of the chemo might help.

[Shams_Vjean]

If it were me I’d be calling the on-call # for some Tramadol at the least. But then I didn’t have any constipation or digestive issues when I had taxotere. I’ve known some who found low-dose fentanyl patches pretty effective for severe pain relief.

Did he get Nuelasta? They didn’t tell me about how Claritin helps with the bone pain from that until the worst of it had already passed.

Hope they get him some pain relief soon. Bone pain is really nasty, even when not already dealing with all the other chemo side effects.

[Sunnysailor in reply to Shams_Vjean]

They gave us an appointment for Thursday. I’m so angry at the oncologist’s staff. I’m going to give him a Claritin. I just gave him ibuprofen and that helped a little bit. I’m also going to message the doctor, I think it’s his Nurse Practitioner making these decisions. He said he’s had broken bones that hurt less, so he’s not over reacting.

[Shams_Vjean in reply to Sunnysailor]

For sure, the intensity of metastatic bone pain is so persistently painful. Clinicians, and anyone else who’s never experienced it, have no idea; otherwise they’d not be so cavalier with helping to give relief.

If he’s being treated at a cancer center of excellence then DEMAND a palliative care Dr. get involved NOW!!

When my wife was recovering from Breast Cancer surgery the surgeon was nearly useless in addressing her post surgical pain. We got her primary care doctor to call the surgeon’s office about it, and that got some action.

Best of luck to you!

[Sunnysailor in reply to Shams_Vjean]

I will do that. Thanks

[JD-guy]

Hello, when I had my first infusion of Taxotere, the nurse told me to keep myself well hydrated with water, to keep from getting constipated. At my first appointment a week later, the nurse told me that I would need to get my bowels moving. (I was almost in trouble.). I went home and started eating dried prunes. That got them moving. 🙂. I had more digestive issues than bone pain. I hardly had any bone pain during chemo. I did take some Claritin after Neulasta. But it was very minimal. Just my experience, I hope he can get on top of the pain.

[tayninhtom]

When I had 6 rounds of Taxotere, the thing that helped me the most was cannibis. I don't like pain pills, make me feel out of it. I'm not a user of the stuff, but damn, it worked great for me when I was in stomach, joint and overall body ache. If you're not able to smoke, they now have tablets and vaping, but I'm not that familiar with them. Being an old school guy, I'd just roll 'em and smoke 'em. I'd smoke up when the pain hit, go about my normal day, and then smoke more when nausea and body/joint ache returned. When the pain left, so did my smoking. Once I realized the pot made me normal again, I returned to full activity--tennis, golf, going out with the guys, etc. It's not a moral or ethical issue, it's simply medicine that worked for me. I haven't used pot since 2015, but would go back to it in a heartbeat if I had to go thru chemo again.

[FortyWinks]

Had my first infusion of docetaxel nearly two weeks ago. Had and instant reaction but that was sorted. Lots of afters with it. Fortunately the pain has not been as you describe. Had guy disturbances, the hiccups, calf pain and raised temperature. Just started on CBD & THC oil. Early days yet but hoping it helps. Hope I can stop with morphine too.

Hope you’re husband has a better experience with the next cycle.

[tsim]

What was the oncologists problem with the weed? It would most likely take care of the hiccups and help with a few others.

[Sunnysailor in reply to tsim]

He says there hasn’t been enough research on it to see how it interacts with the chemo drugs and ADT. He’s science and evidence based and says he’s dedicated his life to research on prostate cancer.

If he’s not going to give him anything besides otc I’m going to just go get it. Screw evidence. My husband says he can’t continue with this treatment if it’s going to be this bad. I’m going to have words with the doctor if he doesn’t give him anything for the next round. The good news is his pain is less today 3-4.

Im going to give him claritin and get the MJ to have on hand.

[RoseDoc]

Severe muscular pain after infusion is not unusual. Drinking lots of water the day of infusion and a few days after does help. Motrin/Tylenol are also helpful. It gets better in a few days.

[positive-thinking]

Hi, My husband has this same pain you speak of with chemo. The claritan and Tylenol did little to help him. He was prescribed Gagapentin to take during the first week and he did not want to take it. He finally took it after the 4th round of chemo and it has gotten rid of the pain he experienced. He described the pain like his bones where like glass and were going to break on him, we were told it is the inflammation causing this from the chemo and also from the injections he is getting to increase blood count

[Sunnysailor]

I finally heard back from another doctor in the clinic. He apologized and spent about 15 minutes with me on the phone. We are going to do ibuprofen 800 mg which is helping. His pain was less today than yesterday. He’s developed constipation and they want to resolve that before narcotics. He said next cycle he will have tramadol and something for hiccups. He also sent in an Rx for Lactalose for Zofran constipation. He said they should have educated us on this and I said nothing was mentioned by the oncology nurse or pharmacist. I told him I would have had him doing miralax preemptively.

[j-o-h-n]

May the sun shine again on your sailor..

Good Luck, Good Health and Good Humor.

j-o-h-n

[Pirate3]

I am also the wife of a Stage IV (bone Mets) man. The chemo is tough to get through but thank God my husband is 7.5 years out now. When we began, we were hopeful that he would get 3-5 years. We have taken several cruises and traveled to places on both of our bucket lists. My point being that as difficult as this presently is for the two of you, it is the best hope for a future of happy memories and precious time together. I know it’s hard to see past the frightening chaos of early treatment. The whole first year was a blur for me. I slowly began to realize that we had made it through chemo and at the present moment, we were okay. We had the same experience with being given scant information and that is such an injustice to patients and their loved ones. I am a retired Critical Care Nurse Educator but had barely any experience with the oncology world. The treatment protocol for metastatic prostate cancer is life altering in so many ways. I am thankful for the internet where I could read medical articles and have contact with people going through similar experiences. It reassured me that what we were going through was “normal”.

I’m trying to remember and it seems like my husband had 4 to 5 days in between cycles where he felt better but then the next treatment would come and he’d start all over again. Be aware that the side effects are cumulative. Each time it will get a little tougher for him. For my husband it was the severe fatigue that most bothered him. Yes he had severe bone pain from the chemo, zometa and Lupron combined but it was the fatigue and brain fog that frustrated him most. His oncologist stayed on top of his pain though and he never made a request that was denied. This has been a huge reassurance to us both knowing that he will not suffer unnecessarily.

I love what an advocate you are for your man. You are quite the lioness and that’s what your husband needs from you right now. He should not have to suffer like this. There are multiple medical helps and it sounds like you are well aware. Have that conversation with your husband’s doctor. There are of course multiple layers of medical decision making and I’m sure the oncologist has the best in mind for the course of care. Trust though is majorly important and it should be established from the beginning.

You will both make it through this part. There will come a time that you are surprised to find you and your husband together are living WITH cancer but the cancer is not your whole life.

Praying that you have many happy memories to make together in the days ahead.

[Sunnysailor in reply to Pirate3]

Thank you for the words of encouragement and wisdom. It’s helpful to lean from others and appreciate you sharing your experiences.