What now - lower back, hip & shoulder pain

[vlcarr]

Before I ask my question I just wanted to remind everyone that I'm still recovering from pneumonia and came home from the hospital last Saturday. I missed my herceptin (every 3 weeks) so we are just going to add another one to the end.

Right before I went in the hospital I had been experiencing lower back pain for well over a week. I mentioned this but of course the pneumonia took precedence.

My lower back and hips were the first thing to start hurting and that's been going on for the past 2 weeks. When I spoke to my doctor about this at my follow up visit she told me to take 3 Aleve 3 times a day. She indicated she thought this was inflammation and could be caused from the Taxotere even though I had my last chemo the end of January. I mentioned that it reminded me of how my lower back hurt when I used to have periods before chemopause.

Well, yesterday my shoulders started hurting and it hurts when I raise my arms above my head. I messaged the doctor and the nurse called in a muscle relaxer and 800mg Mortin and I take each of these 3 times a day.

She also had me come in for lab work today because she wanted to check for myositis. I looked this up on the internet and basically got the opinion it's inflammation of the muscles.

Of course, no one called me today to give me my lab results although they were posted on my on line account by the time I got home. I had an e-mail message that they would call me in the am.

My question is has anyone experienced this type of pain. It even hurts when I get up from a chair and I feel like I'm about 80 years old limping along when I first get up. I wondered if this could be from the herceptin but I didn't get my last one.

Thanks so much.

[Bill]

Hi Vicky! Just letting you know that you are in our thoughts and prayers, sister. I wish I could give some answers to your questions, but I can't. I can give you a cyber-hug, though, and the assurance that alot of help will be coming your way.

[Becky]

Vicki

This can absolutely be muscular inflammation and can partially be attributed to your recent, serious infection.

I am very susceptible to this after a really bad cold, bronchitis etc. My neck and shoulders get so sore its like I've been in a car accident (really). I used to think that the virus embedded in my muscles and maybe, in a sense, this is partially true.

Also, you have really been through so much in the last couple of months - even more treatment than the rest of us got (even if the book was thrown at us at the time) since you also got Tykerb as well. Then you barely get a reprieve after rads only to get really ill.

I think your onc is right to rest, rest, rest and knock this out of you and start stabilizing. If you still have more doses of Herceptin, this will not affect you. If the weather is nice by you, take a small walk (10 mins) then lay in a chaise lounge and enjoy the fresh air.

Eat well. Cut up alot of fruit and munch down. Get caught up on the soaps you used to like or read a romance novel. This will pass. This has happened to me without having just been on therapy. In a month, this will seem like a distant memory.

It is good to stay on top of it though and keep your docs involved.

Huge hug to you

[vlcarr]

Thanks Bill & Becky,

Becky, that is exactly what I feel like-a car wreck! Some days I think I must be losing my mind--what's left of it anyway.

Your post made me feel so much better--thank you:)

[PatriceH]

My post probably won't be of much help, but I describe what you're describing as "I can't go 0-60 like I used to." It always takes me a few steps to get going after being seditary--driving, working at the desk, sitting down. I can't even get up out of the tub like I used to. I have to push up on all fours. I'm almost a year out from the hard chemo, still on herceptin. I just wish someone had the answer to knowing if this is just getting old, or if its a result of all the treatements. Very frustrating.

Hang in there...I'm right behind you!

[vlcarr]

Update-the nurse called this morning and the doctor wants me to limit my fluid intake because my sodium levels are low. They also scheduled a CT scan of chest, abdomen and pelvis for Friday.

She said the doctor would call me on Friday with the results and I would not have to wait over the weekend. The nurse was not sure what the doctor was looking for with the scans other than a source of my pain.

Trying not to worry. Thank you all for your response.

[Midwest Alice]

Hey Vicky and Patrice I know the feeling..

I have a very hard time getting up and going after being seditary. I have a very hard time unbending my body. It takes we many steps before I can get going. The later in the day or the longer I am seditary the worse it is. I walk like I'm 80.. But I'm still walking :)

Right now it is my hips. I am looking into working out in a heated salt water pool at a rehab center.

I started takiing glucosamine last week. Joe gave me that idea several months ago. My Dr. has me on scrip IBPro... that does help.

I too wish we could figure it out.

[vlcarr]

I heard back from the doctor and she is doing the scans to try and find a source of the pain. Also, the blood test below has never been this high. Of course, when you click on what this test is used for or can indicate it says:



Acute and chronic gallbladder inflammation
Bone metastasis
Drug-induced liver disease
Hepatitis

Of course I focused on the bone metastasis!! At least I will find out Friday and won't have to wait the entire weekend.




ALKALINE PHOSPHATASE BLD (https://sp03.myhealthatvanderbilt.com/cgi-bin/sp/resource-log.cgi?+AlkP+http%3A%2F%2Fwww.mc.vanderbilt.edu%2 Fbiolib%2Fmhav%2FThompLabEdu%2FgetContent.html%3Fd oc_id%3D50031): 124* (https://sp03.myhealthatvanderbilt.com/cgi-bin/sp/_e.cgi?MRN=010474229&request=graphs&others=+Normal+AlkP+graphonly)

[Yorkiegirl]

I have constant pain in my hip's, shoulder's and my back as well.

I have been told this all due to osteoporosis that I have that is very severe. I feel like a 90 year person every day.

I do have to say that walking on the treadmill does seem to help with the pain at times.

[Becky]

Dear Vicki

Although it will not quell your nerves, your poor liver has been through alot - even though the chemo is over. You state in your first post on this thread that you are taking 800 mg of ibuprofen 3X a day (that's like 12 regular otc ones) and you are taking some type of muscle relaxant too. When you had the pnemonia you were at least on antibiotics - anything else? The liver is the master drug metabolizer (the kidneys are second). Ibuprofen in larger doses over at least a week's time can do this. And I don't even know what muscle relaxer you are on and increased liver enzymes and AP may be a side effect of that too. I bet your scan is clean and afterwards, discuss the possibility that some of the meds you are on may be causing this and what you should be doing to help bring it down.

It is a concern either way but not so much as cancer (which I really think its the ibuprofen but we can never be too cautious). Try to relax as much as feasible. Its difficult in this situation because we all think the worst when it happens to us and there's not too much any of us can say to make you not worry. But try to keep busy with movies and books and get your mind off of it. Friday's almost here and then it will be a happy weekend.

[vlcarr]

Thanks Becky. Yes, while I was in the hospital I was getting 2 different antibiotics by IV twice a day and oxycodone for pain. The muscle relaxer is Cyclobenzaprine (generic), 10mg, 3 times a day. I also forgot to mention that after I came home I got thrush and hand, foot and mouth and have been on medicine for those as well. So, you are so right, with all those drugs......

The other thing my doctor was a little concerned about was my sodium level-it was low. They told me to drink very little water or tea and they are going to recheck that again in a few days.

I've just had a rough time of it lately, but you are also right that none of these things are cancer. I'm just tired of being tired and feel bad about that because many of you have been fighting this a lot longer than me. I told my husband the other day I know I had a life before cancer but I don't remember it.

It's also didn't help that I got the pneumonia, because I was through with the Tykerb, mastectomy, chemo and rads and was so looking forward to feeling well again.

So, I'll take a very deep breath and calm myself down. Once the scans are done then I can deal with the other issues.

Thank you so much for your words of wisdom:)

[ammebarb]

Thinking of you Vicky and hoping that you will soon get reassuring news. Also sending wishes that you will begin to feel well.

Barb A.

[Becky]

That muscle relaxant can also cause your AP and liver enzymes to rise as well. That can be a side effect of that drug too. I didn't look up oxycodone because you are not taking that right now but you are taking the ibuprofen and the cyclo. Sit tight girl. Smile as much as possible.

[Ellie F]

Hi Vicky
Just sending you good wishes that you will feel much better soon. As has already been said by others it seems to take months and months for things to settle down following treatment for breast cancer and you have also recently had a big fight with an infection.
Ellie

[whatz]

Hi Vicky,
You hang in there! What Becky says sound very logical and more than likely will be the underlying reason for your blood test values. Glad you'll find out more today and don't have to carry that thru the weekend. We're all rooting for ya. Sending up prayer for you.

[vlcarr]

My tests turned out normal and also showed my pneumonia was almost gone!!!! Yeah.

The sad part is the nurse and my onc said they would call me and not make me wait over the weekend to find out the results. My husband and I even ran into my onc at the hospital in the hallway right after my scans.

I told her that last night my fever went up a little and I just ached and hurt so bad I could not rest. She said she was going to the hospital for a consult and she would stop by radiology after that. I then said, And you will call me, and she said yes.

Well, at 9:00 pm tonight I called the 24 hour emergency number and the onc on call found my results and gave them to me over the phone.

I really, really like my onc and know she is very competent but this time she screwed up.

Now I'm trying to think of the best way to give that feedback to her. I can e-mail her through the hospital web site......I don't want to scream and yell (that's not like me anyway). I need to think about this. My friend's father is a surgeon so I may call him and get his advice from a doctor's standpoint. The funny thing is my friend said her Dad always gives his patients his home phone number, cell phone, etc. I don't think I've ever had a doctor do that!

My pain tonight has not been as bad. Last night my fever went up again (99.5) and I just ached and hurt so bad that I could not rest.

Can you have withdrawals from herceptin? I missed my dose due to the pneumonia so just wondered if that is even something that could explain my pain?

At least I can relax and have a good weekend now.

Thank you all for your encouragement. Don't know what I would do without you all.

Happy Mothers Day everyone:)

[Chelee]

Hi Vicky,
You sure have had your share lately...my heart goes out to you...I know how stressful it can be. After reading your posts here it sounds like could have "Polymyalgia rheumatica"? I had never heard of it until my MIL told me about her friend that has it. I've heard so much about it this last yr. It sounds just like your symptoms. The way your pain came on in shoulders and hips...there is also inflammation involved which would explain the pain your experiencing. You can also present with high alkaline phosphatase results as you are. I couldn't help but notice you are just recovering from pneumonia too--it seems to be related also. Read paragraph below this;

>>>There may be a link between polymyalgia rheumatica and certain viruses, such as adenovirus, which causes respiratory infections ranging from the common cold to pneumonia; human parvovirus B19, the source of an infection that primarily affects children; and human parainfluenza virus.<<<

This may not have anything to do with what your experiencing but after my MIL's told me so much about this Polymyalgia rheumaticato that her friend has I couldn't help but wonder & thought I've just throw it out there just in case. You never know. (Just call me Dr. Chelee.) lol Here is a link that explains it from the Mayo Clinic.

http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441 (http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441)

I hope they figure this out soon for you and can get you feeling better. Thats just not right that your doctor did not call you. She has to have a good idea of the stress your under...it's not right to leave you sitting there waiting. I know I would say something to her...and I know you will. Talk to the surgeon for ideas...that is a good idea. But something does need to be said so she doesn't do that to you or anyone else again. Let us know what you find out. As far as withdraws from Herceptin...I've never heard of that...but it doesn't mean it can't happen. I'm glad your pneumonia is almost gone...that's great. Now maybe you can relax a bit this weekend. Wishing you a very HAPPY MOTHER'S DAY. Keep us updated, & hang in there.

Chelee

[Ellie F]

Hi Vicky
No words of wisdom just wanted to say that I am so glad your scan was normal and the infection gone.Hope you feel better soon.
Love Ellie

[WolverineFan]

Hi Vicky,

I haven't been on the board in weeks bec/ I've been buried at work, but just logged and and am trying to catch up. So glad to hear that the scan went well. I have been incredibly achey (sp?), and actually thought it was the result of Femara. My hips, knees, and back. I've never had problems like that before, but I believe Femara can cause that, so if you are on an AI, that might be the cause as well. I am so glad that the scans went well. Happy Mother's Day to you and to all the her2 moms on this site!!

[Westcoastgirl]

Just so you know, the normal range for Alk Phos is 35-105. My levels were up to where yours are all during my chemo and well beyond that and never once was my onc concerned. There are so many things that can trigger this rise. Mine came back to normal but it took almost a year. Just to add to the list of women here, I too experience aches and pains like I never had before diagnosis. In the morning it takes me a while to get moving correctly. Until I loosen up I walk around like Frankenstein. Take care and keep the faith. Carolyn

[vlcarr]

Thanks everyone. Hayley, just wanted to mention I won't be taking AI's. My onc said in my case I would not benefit from them.

I wanted to update everyone that I had an appt today with the lymphedema therapist I had worked with radiation. I told her about all the aches and pain I was having, the pneumonia, thrush, hand, foot and mouth, etc, etc and on and on.

I told her my shoulders hurt so bad there is no way I can do many of the lymphedema exercises since I have to hold my arms above my head.

She did a thorough exam and told me to not even worry about those right now. My right arm is 1 to 2 cm (depending on where she measured) bigger than my left. However, she did tell me to wear my sleeve every day regardless of whether I'm exercising or not.

She is going to start "body work" as she calls it on Thursday. She is going to be doing the myofascial (sp?) therapy on my whole body. She said I was so, so tight all over. I'm also going to be doing some work in the pool.

I'm looking forward to this and hoping this helps. I know when they did that after my mastectomy it helped me so, so much.

If any of you suffering from pain can get this I encourage you to do so. It's a very, very gentle type of touch.

That's just a short summary of what we discussed but wanted to give an update. I want to get off these pills........

[vlcarr]

Thank you all so much for your posts.

Chelee, I'm going to print that information and take it to my doctor next time I go which will be 06/24-the day of my last herceptin.

I also wanted to give you guys an update. I spoke to the nurse this week and she said they "suspect" I may have had Legionairre's (sp) disease. I must say that was a new one for me!!

I had to get a refill on the yeast medicine because the thrush seemed to be hanging around. It's better now.

I had my first visit with my lymp/physical therapist on Thursday. She did "body work" as she calls it on my hips, legs, feet, scar line, etc. using the myofascial techniques. They were never able to work directly on my scar line before because I had the problems with it not healing. It looks so much better now.

Some of it felt good and some of it didn't but I knew that meant things needed to be loosened up. I felt better yesterday than I've felt in 2 weeks. I'm still dealing with the arms and shoulder issues but have new exercises that I can do. I'm just not able right now to hold my arms above my head for very long at all.

On Tuesday I will be in the heated pool. I've been walking each day and trying to either go a little faster or a little longer. I can tell my lungs are still not that great but getting better.

I got knocked down but I'm coming back up with the gloves on. I feels so good to have a plan of action.

Love you all,
Vicky

[caya]

Hi Vicky,

Glad to hear you are feeling better. I have fibromyalgia, and the pain from that compounded with the aches and pains compliments of Femara have made me pretty miserable. I find that exercising in a warm pool really helps. Also taking a hot bath with Epsom salts or Dead Sea Salts is nice too.

Legionaire's Disease? Oy!! What next for us Her2+ gals (and guys)?... It's always something...

all the best
caya

[Catherine]

Hi Vicky,

I am wondering if you are maybe feeling better by now. The last post I saw was about 10 days ago. Just wanted to share that I think it took a good 2 years after my treatment to start feeling "normal." Then my normal was a new normal, no 0-60mph for me anymore either. It was more like 0-40mph. Now 4 years after treatment, I have almost accepted the new slower me. I am creaky when I first get up after sitting for an extended time. I get wierd body aches, but can usually work them out with stretching and walking. I really have to pace myself. I sometimes long to be the "old me", but then I remember how happy I am to be well and done with treatment. And knock on wood....NED. Hoping you get better soon. Take the best care of you that you can. Let someone else cook and clean....you take it easy and pamper yourself.

Hugs, Catherine

[BonnieR]

Vicky, I had a simplistic thought. (Sometimes they are good to have!). You have been in bed and inactive for various reasons for awhile now. I know that I recently was in the hospital and then recovering at home. Sometimes my back aches terribly just from laying around. I could scream. No position is comfortable. So that may be contributing to your symptoms.
Keep the faith.

[COOK12151]

HI,
My name is Margie. I was dx in May 09, syahe 1, er pr negative, and her2 positive. What was your tumor size?

[vlcarr]

Margie,

My tumor size is in my signature line along with the "rest of the story".

Just wanted to let everyone know that some things are better and some are not.......I'm still working with Mary Kay (therapist). We've gotten to be pretty close through all this and share a lot of personal information during my sessions. She's the best.

My leg & hip pain is better. On Friday I did a few of my exercises that require my hands be over my head. The very next day my arms and shoulders hurt so bad I could barely get my bra on. They even get cramps in them. I will discuss this with her at my session tomorrow. I have a pool session tomorrow.

My new thing is to wear my fake boob every day. Because my remaining breast is so heavy she said I was starting to lean a little to that side so that could be impacting my shoulders as well.

So, I've been wearing the darn thing even though I'm at home. I never wore a bra at home before cancer and I sure hate wearing one now, especially with the fake boob......Now that I'm doing that I've noticed swelling in my trunk as well.

I hate cancer. I wish I didn't have the other breast--at least I would be balanced. It's not that I have HUGE breasts it's just they are heavy ones........

Been a little down over all this but will keep on plugging along and keep the faith. More adjusting to my new normal.

I will finish herceptin on 06/24. I still seem to have no energy but have been walking every day. I try and go further and a little faster each time. It's been so terribly hot here. I can tell I'm still not fully recovered from the pneumonia.

Trying to be patient.....not my virtue but this cancer is bound and determined to beat me into submission.

Thank you all for your comments.

Much love,
Vicky