severe pain after lobectomy

[axus]

Hi
Last October, my wife (62) had upper left lobectomy for nsclc. This was followed by radiotherapy. She took both in her stride and coped really well. Now the pain has taken her fight away and we are struggling to cope.

A couple of weeks after the radiotherapy finished she started getting severe pain in her right arm causing it to hang limp. In addition, she is now starting to get severe pain in her upper back, it works it's way down her spine, across into her stomach and into her legs. It lasts a couple of minutes before fading way leaving her with a background pain which rarely goes away.

She has been perscribed various morphine type drugs and patches which eases the background pain but not the intense spinal pain. She has had a bone scan which came back clear.

Though the bone scan came back clear, the pain is getting worse. She is wearing a 10 microgram patche, taking 600mlgs Gabopentin 4 times a day plus 2 of 500mlgs paracetamol several times a day. Nothing seems to touch it.

Yesterday she had a full spinal MRI scan to see if anything shows.

In addition, several weeks ago, she started with an area of her scalp, just behind her right ear, getting very painfull to touch, followed by small lumps that are extremely painfull if touched. This is now spreading though no one seems interested in it.

We are seeing a Pain Consutant tomorrow and hopefully she will be admitted to a Pain Control ward.

I appreciate the efforts to try to control the pain but I desperately need to know what is causing it.

Does this sound "normal" after lung cancer surgery and has anyone else had similar pains please.

Thanks
Keith

[pbj11]

Hi,

So sorry to hear your wife is having such pain this far after the lobectomy. I'm surprised as it sounds like she was doing well initially. There are tons of nerves in that area and sometimes they can cause horrid pain as they try to heal and create new connections. As for the pain management clinic, good luck. We were terribly disappointed because we thought they would offer some alternatives to the problem and they just prescribed heavy-duty painkillers. Guess science hasn't really come up with anything else.

What is the Doc saying about these new head lumps? This is something different, but not unheard of.

Are they saying her pain has anything to do with the side effects of radiation? I've never heard it manifest in this particular way, but everybody is different.

I'm so very sorry and sure hope she finds something to help. It's hard to watch a fighter get the stuffing knocked out of them by this pain.

Let us know how your visit goes today.

God bless,
PBJ

[hmd]

Hi Axus,
Just thought i would chime in and metion that when my mom initially went to the hospital she presented with lumps all over her body. They were under the skin but not on the bone and painful to touch. The doctors couldn't figure out what they were, because they had never seen them. The biopsied them and they came back cancerous and thats how they found the lung cancer. Im not sure if these are the same as your wifes, but be sure to get them checked, could be the cancer spreading. My thoughts and prayers are with you in this difficult time.
Hailey

[axus]

Hi

Thanks for your replies.

Yvettes MRI of her spine has come back clear. Her Doctor was amazed as she fully expected to find a tumour in her spine. Now they admit they haven't a clue to what is causing the pain in her back or scalp. When I see her Doctor, I will ask about a biopsy on her scalp.

At last she was admitted to the pain clinic yesterday. They are taking her off all painkillers and starting afresh to find a suitable one.

Four years ago, Yvette had "crystalization" in her breast, she had a lumectomy followed by radiotherapy.

When we saw her chest Consultant about 3 weeks ago he said he may have seen more chrystalization but wasn't sure. Seeing as Yvette is having a routine Mamogram in July, he will wait and see what shows then.

July now seems a long time away.

Keith

[axus]

Hi
It is now 8 months since Yvette had her lobectomy and she is still in constant pain plus waves of intense pain. Both the bone sacan and the MRI spine scan came back clear.

She was admitted to the Paliative care ward for a few days followed by a referral to the Chronic pain clinic. Her medication is now :-
Butrans 15micrograms/hour Transdermal patches
600mlgs Gabopentin and 2 of 500mlgs paracetamol 4 times a day
clonazepam 50 microgrammes 2 at night plus half a tablet as required
2 Buprenorphine 40 micrograms sublingual tablets as required.

Nothing seems to touch it.

As to her scalp, the pain has now spread to about two thirds of her scalp with a single hard swelling to painfull to touch and an area just about where the spine joins the skull which is extremely painful.

The only suggestion we have received is to see a dermatologist which will be on the 4th August.

She is now feeling very depressed and is being to believe that she will never be rid of the pain.

Keith

[pbj11]

Gosh Keith -- I really feel terrible hearing this update.

As I've probably said before, I don't have much experience with constant pain nor the meds.

I just wanted to send hugs and best wishes to you and your dear wife. I'll pray for some answer to her pain. It's little wonder that she is feeling down. Anyone in her situation would.

I'm so sorry.

God bless,
PBJ

[onecoyote]

Hello Keith,
I am so sorry to read about your wife's pain. It must be unbearable. Have you thought about posting your struggle over on CancerGrace.org ? Maybe Dr. West or his associates might have heard of this syndrome and can aim you in the right direction.
I will say a prayer for your wife's relief.
Charlene

[axus]

Hi

Thank you for your reply and best wishes. I have gone on Cancergrace.org and allready had a helpful reply from Dr Mary Pinder

I am trying to get an early appointment to see one of Yvettes consultants but so far without success

Regards

Keith

[melkissa]

I hope they find something to relieve her pain soon.

[axus]

Hi

Thank you for your messages.

As nothing was happening about the pains through Yvette's body, and a long wait to see a dermatologist, I decided a more pro-active course of action was needed. According to our GP, it could be anything so keep taking the painkillers as we might never know what it is.

On Monday the 22nd June, I wrote a long letter to all the Consultants we have seen, listing her present and past condition. I started be writing:-
I am writing to ask foryour help, no I am begging for your help..

Saturday morning the 27th June I received a telephone call at 09.15 from a consultant saying he had only just read my letter and we must come in Monday morning at 09.00 and insist the receptionist book us in to his clinic. We did, saw him at 09.15 and Yvette was admitted straight away.

Today she has had an MRI scan with radiation injection and blood tests. They are arranging for the Dermatologist to see her while she is in.

We are hoping and praying they find the cause (s) and they can be treated. If they say they cannot I may yet refuse to bring her home.

Sometimes it pays not to sit back and wait for the Doctors.

Keith

[onecoyote]

Keith,
I am an advocate of being "pushy". My husband would have died had I not "pushed" the right people. More power to you and my prayers that Yvette gets some relief from that horrible pain.
Take care,
Charlene

[axus]

Hi Charlene

Thanks for your message. Isn't mankind strange, we can find billions to put men on the moon and send rockets to various planets yet cannot find a cure for cancer.

Have you heard of Joanne Budwig and her protocol for treating cancer. http://www.budwigvideos.com/articles/20080527_6

When Yvette was diagnosed with nsclc we were told that the tumour was 4.6 cms. We started on the protocol immediately and when the upper left lobe was removed about 3 weeks later, the tumour was 3.2 cms.

I cannot say whether it was the protocol or something else but it would need a hell of a coincedence.

Anyone claiming to have a "cure" for cancer will be in big trouble as the drug companies have it all sewn up. To many billions of profit to lose.

Keith

[dano]

Hello Keith;
We in many ways are opposites you and me. I am so sorry for the both of you, it takes so much strength for you both to endure, and to your credit you both show tremendous character. I'm guessing that you wife was staged either I or II, where I was IV, normally they don't do surgeries on stage III OR IV. And it seems so common to have surgery and radiation then problems showing up down the line and the patient is far worse than when they started. I'm sure there are many winning cases, but I have not heard of any in this forum, please folks, if you are hearing good stuff let me know. I was staged NSCLC Stage IV, and in a way the docs sort of throw in the towel, but still do what they can, and so far all that they have done has worked and my over all quallity of life now is better that when I was diagnosed over a year and a half ago. And right now both of you have a real low quality of life and I ache just thinking about it. You are the caregiver and I am the patient, yet I would not trade positions with you if I lived another 40 years. The pain I've had can not compare to what your wife and your heart has endured. I wrote a poem here for another man who was loosing his wife to the monster, I'll share it with you if you like.
There is an interesting similarity between faith and the flesh. trying to determine what is the truth and a lie is very hard for a man, but not so for God, trying to divide the marrow from the bone is impossible for doctors yet God can heal, I know that the doctors did their best for your wife, but it is so hard to be perfect. I knew my days were numbered yet I knew that I needed prayer by many to help fight this monster, because I knew God was much Bigger than cancer. Yet, regardless I knew he also allowed this to happen, and there are many Christians that have died with cancer so why not me? I don't know, but every day I am well I am thankful, and I'm trying not to harbor bad things towards people and try to do good....the best I can, but I'm not perfect at all. But your situation I can not imagine, how are you finding strength? And your wife? I would love to hear. You sound strong through this, keeping a good face for the woman you love, yet inside you must be a mess. I will hold the two of you up in prayer, and If I can get her name I'll share it others that will pray you and your wife for healing, for strength, for the pain to subside and for peace. There has to be a reason for this happening, but God normally does not bring this about with out the cause of helping people some how, I think he see's something very special in the two of you, I can only think of Job in the bible endured something so bad, yet he refused to curse God, even after all God allowed the devil to harm Job, God did bless Job after all he went through and God knew Job could do it because he knew his heart, Satan did not. The book of Job is a short read, but it might left your spirits if your not real familiar with it. My prayers are with you.
God Bless
Dan

[onecoyote]

Hi Keith,
Yes indeed I have heard of and follow Johanna Budwig's protocol. Even though my husband is now a stage 4, I still give him the flax seed oil and cottage cheese for breakfast. Old habits die hard. Regardless of whether this helps or not, I still think it can't hurt and still gives him superior nutrition.
I sincerely hope you can get this pain issue resolved quickly. Out of every side effect/symptom this monster produces, pain is the one thing none of us want to experience or see our loved one suffer with.
Hugs and prayers,
Charlene

[axus]

Hi everyone.

Just a quick update, Yvette has had a Cat scan and we are told that her spine is likely to have mets. We are going to the Hallamshire hospital tomorrow for investigations into her scalp pains then Friday she is having a bone scan.

We were initialy told that it would be an MRI then it was changed to bone scan as that was more appropriate !!!

Unfortunately I don't have your faith to assist in coping.

Many regards

Keith