Bone, Secondary Cancer

Forum Post: Re: Any advice would be appreciated

JIngarfield — Wed, 03 Apr 2013 13:51:00 GMT

Gosh J-Dils, have just read your profile - your poor thing. As you may have read above, my darling Mum was diagnosed with primary liver cancer which has spread to her pelvis, spine and lungs (that we know about!)...she's been in such excruciating pain as one of the secondaries in her sacrum area has basically been squashing her sciatic nerve :( She had some RT to her sacrum back in Oct last year which did help, but she still needs nearly 500mg of morphine per day just to remain even remotely comfortable.

How have you found your treatment?

Jemima x

Forum Post: Re: Radiotherapy on lumbar region leading to pins and needles down legs

JIngarfield — Wed, 03 Apr 2013 13:31:00 GMT

Hi Poppy

My Mum had RT on her sacrum area in Oct last year and suffered a lot from 'pins and needles' type sensations down the back of her right leg. The secondary they were treating was pushing against her sciatic nerve which (still) causes shooting pains right down her leg, but the RT caused some numbness and tingling as well, all the way down to her foot (but did help with the pain). I believe what you are experiencing is nothing to worry about and quite a common side effect from being treated in that general area, but if in doubt, ring your Oncologist's team or the RT team...I'm sure they'll be able to put your mind at rest.

((hugs)) - hope your treatment is going well.

Jemima x

Forum Post: Re: Help

PhilB — Fri, 29 Mar 2013 12:39:00 GMT

And finally we get a diagnosis - arthritis!!! Two months of terror have ended. To those of you who aren't so lucky we wish you well and thank everyone who contacted us. P&M

Forum Post: Re: Caring for Mum

JIngarfield — Mon, 18 Feb 2013 18:30:00 GMT

Only just seen this and sorry to hear about your Mum - is she taking any morphine based pain relief? Pain relief meds can often cause constipation. My Mum started on Lactulose but had to quickly move to Co-danthramer which is stronger (Lactulose is more of a lubricant really). You should try and speak to a Palliative Care Doctor as they should be able to manage ALL of your Mum's symptoms, be it pain, constipation or weight loss. You could also request to see a Dietician as they may be able to give your Mum supplements like Fortisips which might help put some weight back on if her appetite is suppressed.

Good luck - also, posting in the 'Carers' section of this site often gets some more regular responses.

Jemima x

Forum Post: Radiotherapy V Nerve Blocker

JIngarfield — Mon, 18 Feb 2013 18:12:00 GMT

Hi there - brief background: on 26th Sept last year my darling Mum was diagnosed with primary liver cancer (HCC) which has spread to her sacrum, spine and lungs. The secondary tumour in her sacrum area has, right from the start, caused her ALL her pain, and has already been treated with a course of Radiotherapy (Oct 2012), and she is currently on 150mg Zomorph (twice daily), Oromorph (when required), 75mg "Lyrica" - Pregabalin (daily) and Paracetamol for her pain relief.

She had a 3-month, post-chemo scan back in January this year when we were told her Sorafenib hadn't worked. She is no longer receiving treatment. I asked if there was a possibility for more RT as her pain has progressively worsened. I am still waiting to hear back, but in the meantime, the medical team have since mentioned a 'nerve blocker'.

I've done some research online as I've not yet been able to speak to anyone to discuss this option (and its possible pros and cons) further but was wondering if anyone knew anything about this/has had it done?

Her pain is being caused from the tumour in her sacrum, pressing against her sciatic nerve down the back of her right leg. So that is where they would direct any 'nerve blocker'.

Many thanks in advance...

Jemima

Forum Post: Re: PSA meanings

garry colin — Wed, 13 Feb 2013 22:37:00 GMT

Hi Mal, thanks for your reply it has helped hearing from someone who has symptoms like mine. I will know in April what my psa readings are now. All the best Garry colin

Forum Post: Re: Sec. Bone cancer - after Stomach cancer...what can I do?

esmary — Sat, 05 Jan 2013 22:48:00 GMT

Hello again,

I went to Portugal and saw my dad. We talked and cried together and i begged him to please tell me if it was worst than I thought. I explained how worried I am and even if my pain and worry is not nearly as big as his I need him to be honest because he is my best friend and my everything in this world.

He was doing radiotherapy at the time and in a lot of pain. After I've left he has done chemotherapy and was waiting to go on the second round but has to do radiotherapy to another vertebra first.

I have to be honest....I got much more hopeful after being there. Is this bad?

I still know I have to be prepared....he has cancer and we don't know what will happen....but he is so confident, so hopeful....he is being so strong and I'm so proud of him.

The updates I have is that....the cancer started in the stomach and they removed it and the organs that are usually affected is the liver or pancreas. When he start having pain in the spine they checked everything and all the organs around are clean. There's nothing anywhere besides on some vertebras.

He is very hopeful and he gave me hope as well but when I talked with the nurse from Macmillan I got super scared and that there is not much hope because it's in the bones. She was really amazing and supportive but I don't know what to think.

One thing I can say...my dad is a fighter and he is the one giving everyone else hope. Him and his wife are being amazingly strong and I can't even describe how proud I am and how happy that they have each other.

Thanks for all the support I've been having in this group.

Forum Post: Re: Metastatic prostate cancer

lemonjack — Thu, 20 Dec 2012 09:03:00 GMT

Dear Paul. Thank you so much for your reply it is exactly what I needed to hear and has given me the hope which I desperately need to pass on to my husband. I had never even thought that my husband's illness was terminal until a Macmillan nurse said that we couldn't claim any benefits for him unless it was terminal. No one along the chain of professionals had even mentioned it so it absolutely floored us both. Of course she meant terminal as in going to die within 6 months but even so it was said in a very matter of fact and insensitive way that I have been worried sick for the past couple of months. I know his illness is terminal as in there is no cure but it is treatable and with new drugs coming out all the time I am hoping that when the hormones become resistant to the cancer there will be something else on the market that will help and prolong life. I really wish you all the best Paul and thank you for lifting my spirits. Have a very merry christmas and all the best for 2013. Please let me know every now and then how you are doing.

Forum Post: Re: Can secondary bone cancer start as an isolated met in the knee?

Cleo — Thu, 22 Nov 2012 11:47:00 GMT

Hi, I'm not a frequent blogger here but having seen your situation I can empathise. I was diagnosed with a solitary secondary bone met in my 6th rib in March this year. the technical medical term for me is Oligometastasis. Evidently they could tell is was a breast cancer tumour because of the way it looked on the CT scan. Breast cancer in bones appears like 'Swiss cheese', lots of holes. Was originally diagnosed with BC in October 2009 with no spread then. This secondary diagnosis came about from recurrent pain in my mid back/chest which at first I thought was muscular but kept coming and going. I am now on Ibandronic Acid 50 mg once a day, Adcal D3 1000 mg twice a day for my bones. Letrozole 5 mg once a day and Zoladex implants 10.5 mg every 84 days as I was premenopausal still at this diagnosis (I 47 years old) and I also take Omeprazole 40 mg every day. I had 10 sessions of 40GY radiotherapy in April to help the rib and a CT scan in June showed 'signs of sclerosing' healing of the rib and it has certainly helped control the pain. Isolated mets are uncommon but invariably the treatment is the same with Rads and drugs. Hope this helps reassure you a bit. Everything is doable and living with it is just something I have had to come to terms with. surgery was discussed but I took the decision to not go down this route because there were too many reasons in the end not to have surgery. Do your homework with all the treatment options open to you. Sending you a big hug, we all know how difficult a time it is at the moment but there are many people on this site and out and about who live with secondaries for years. Hang on to that fact, it will help you:))) it has done for me;)))) xxx

Forum Post: Re: Best Pain Medication? Oxycontin?

broomsticklady — Thu, 15 Nov 2012 17:45:00 GMT

Hi - I've breast cancer secondary bone mets in my spine hips and a few other places. I've benefited greatly from radiotherapy which my pain man (palliative care) says is the best treatment for bone mets. I started on oxycontin rather than morphine cos from a reaction to another drug they knew I'd not tolerate morphine well. I didn't tolerate oxycontin either particularly well but didn't realise there were alternatives. I'm now on hydro morphine which suits me well - the same dose of oxycontin which had me awake 5 hours a day if I was lucky I brush off as if it were paracetamol!! Talking of which, I'm told paracetamol 'eases' the path of the morphine and makes it better absorbed - worth bearing in mind.

Nina

Forum Post: Re: Secondary Bone Cancer

ReshJes — Sat, 20 Oct 2012 20:45:00 GMT

Hi Poppy,

So sorry to hear about your scan results. Our mum was diagnosed with bone and liver mets from Breast Cancer last December. Since then she has had tablet based Chemotherapy & radiotherapy.

The only advice we can give is, it is very important you take good care in your eating and drinking. Keep your immune system strong, lots of fruit and veg. Walking is probably the best exercise, we try our best to take mum for her daily walks.

Wish you all the best

Regards

R & J

Forum Post: Re: Can anyone help? Metal Pin

sandra.m — Fri, 21 Sep 2012 16:11:00 GMT

Hi Eileen,my husband, Brian, was diagnosed with lung adenocarcinoma in April this year. It was discovered via hip pain as it had gone into his bones and liver. On the day of dx the specialist would not let him come home as his hip and femur had disintergrated so badly.He had pins(nails) put into his leg and hip, spent about 1week in hospital after the op but did not need any blood transusions. His hip/leg was so much better after the op it was unbelielable. Unfortunately he is not too well at the moment as he had had pneumonia and a lung abscess which has really weaked him. He is on a long course of antibiotics. Hope your Dad is recovering after his op and he is feeling much better. Best wishes, Sandra x

Forum Post: Re: Hi new here

lynn23 — Mon, 20 Aug 2012 19:52:00 GMT

kisty I know exactly what you mean about stamping your foot! My original treatment when i was first dx was excellent.hospital was big and busy so generally ended up doing a lot of hanging around but my oncologist,radiologists and nurses were all first class. I trusted my oncologist completely,she knew I wanted to treat it as aggressively as possible,talked everything through with me and in the end i felt I had been involved in all decision making.And then I moved to a different area,my new oncologist had a totally different approach, treated secondary cancer as something that you had to accept and they would do their best for you.I had to ask for scans because I had new pain but was just changed from oral bisphosphates to zometa and following a physical examination was told no worries my cancer was stable.I also had spread to lymph nodes which had not responded to hormone therapy,chemo or radiotherapy.My original onc had said surgery was a possibility but when I asked my new oncologist was told "just a waste of time as you are stage 4" I went hope really upset and angry,phoned my gp and asked for a referral to a new hospital.I now get my treatment at the Royal marsden.I have had 3 monthly scans,2 mri's a new bone scan.I see oncologist every 3 months and have had operation to have my lymph nodes removed.Of the 20 lymph nodes removed 17 had cancer so I am pleased I persevered.Phycologically it has made a great difference, no longer have a huge lump in my armpit which felt like a foriegn body.I have learnt to ask questions and have mostly got answerw,even if not always what I want to hear.I am now on letrozole,adcal and zometa.My last scans show everything to be stable.I am currently in a lot of pain in my right hip and scaitica down my leg which is really pianfull but i know it is arthritis so quite happy to live with that. re hot flushes on letrozole I have found they have become less after 2 years.I have also found I cannot tolerate certain brands of letrozole so if you are getting bad se's on letrozole ask your pharmacist to order a different make.I now have become used to my new life and just try to carry on a normal existance.It has taken me a while to get to this state but my oncologists treat it as a critical,treatable disease so that gives me confidence to look to the future.I also have a really great clinical secondary nurse who is just at the end of the phone and will answer any question no matter how silly.Take care all and good luck with your treatments.

Forum Post: hi just joined here

lynn23 — Fri, 17 Aug 2012 21:06:00 GMT

hi all

I was dx with secondary breast cancer (but no primary found) in May 2009.I have secondary spread to spine,ribs,hip,pelvis and femur.I also had spread to lymph nodes which i have recently had removed.I had chemo(3 FEC, 6 Tax), have had 2 lots of rads and now on hormone therapy+zometa every 4 weeks.My latest scans show all my mets to be stable.

When first dx I was really distressed but have now come to terms with things and do manage to get on with life, apart from the pain I am currently suffering in my hip and leg but following exstensive tests I know this is arthritis and not cancer.

Forum Post: Re: Hi im a newbie seeking help !!

Moderator - Macmillan — Tue, 07 Aug 2012 15:52:00 GMT

I am so sorry to hear about your partner's diagnosis.

I think it might help if you call our free helpline on 0808-808-0000 and speak to one of our nurses or consultants. They should be able to advise and give some information how to cope with the illness of your partner.

Forum Post: Secondary bone cancer from nasopharangeal cancer

valeriej — Sat, 07 Jul 2012 08:56:00 GMT

My husband was given the all clear from nasopharangeal cancer this April and has had back ache which has progressively got worse since. After discovering a fracture in his lumber spine a CT scan was done and we have been told he has a tumour growing on his spine (which has expanded the bones causing the fracture) and some cancer on his pelvis, a matastatic of his head/neck cancer. He was in horrific pain and the meds made him hallucinate, subsequently he was admitted to hospital a week ago and transferred to Norwich Hospital Wednesday.

The spine specialist is going to perform surgery on 16th - steel rods in back and cement which should, if successful 90% chance, give David mobility and help the pain. Then I believe the oncologist will decide on radiotherapy and whether chemo is useful or not.

It's a huge blow and I am terribly scared, David seems to be taking it in his stride, but he looks scared today. My brother told me someone he knows has bone cancer of 9 years which gives us hope but I am so scared of it spreading especially to his organs. We've had a horrific year and now this.

Do any of you have any advice please? Thanks

I know you are going through similar experiences and I send gentle {{{HUGS}}} and positive thoughts.

Forum Post: Stage 4 Prostate Cancer

vinsim — Fri, 01 Jun 2012 09:20:00 GMT

Hello everyone.

I've recently joined the Forum. I'm a 69 year old male.

I would like to know if there is anyone in a similar position to myself. I was diagnosed with Aggressive Prostate Cancer 12 months ago with a PSA of 53 with cancer in the pelvis and spine regions.

My PSA is now 1.3 but 2 small tumors have appeared on X Ray - rib and pelvic area. I feel great and I have been very active until 3 weeks ago when I fell and broke my right humus (upper arm) bone. Saw my consultant last week and confirmed that the Zoledex I had been on had caused bone thining and had contributed to the break.

Apart from Zoledex I have been on a diet - mainly vegetables, fruit and protein - occasionally breaking the rules but no sugar, processed foods or dairy products. I follow the Budwig Diet which consists of a daily dose of Flaxseed and Cottage Cheese mix - will not work if you do not adhere to the diet. Recently, I have been taking a 10 day dose - 10 days off of Aloe Vera gel + mix.

Whether it will help to combat the cancer, only time will tell.

Forum Post: Desperately seeking travel insurance

Jools999 — Wed, 30 May 2012 17:22:00 GMT

Hello, new member here.

I am going to Italy for ten days in June and have been struggling to find anyone to insure me with my existing condition, who doesn't try to charge ridiculous prices. I have metastatic breast cancer with bone disease, and am on ongoing treatment. I'm in pretty good shape, apart from mobility not being that great, but it's not a problem for me, and have just started Capecitabine, the first cycle finishes on Friday and so far so good.

The problem is that I can get insurance but they either won't cover the condition, not that I'm even expecting anything untoward to happen, or they want to charge stupid prices. I've had quotes ranging from £600 to £2700, which is absolutely ridiculous for a ten day trip which only cost about £250 in the first place. It's blatant discrimination against people who are trying to maintain some quality of life.

Has anyone else had this problem and if so, can you recommend any companies to me? Incidentally, I've only been trying the so-called specialist companies, but if you've got mets in more than three bones, you're stuffed basically.

Thanks in advance.

Forum Post: V. worried about SE's - Rads start tomorrow

Cleo — Wed, 28 Mar 2012 15:38:00 GMT

Hi All

Just come back frorm seeing my Oncologist and he has worried the life out of me. I am due to start radiotherapy tomorrow for the rib metastasis I have secondary to breast cancer. He's told me to 'prepare for a lot of pain during the 2nd week of treatment and make sure I take the Morphine he has prescibed'. Also 'be prepared for a bad cough developing which could last anything for 6 months to a year!!'.

I knew the treatment was going to be difficult as the pleura of my left lung is already attached to teh metastasis of the rib and I also knew there was some risks in having RT due to the close proximity of the lung but now I'm beginning to freak. I know this is the only remaining treatment option I have (surgery was ruled out as to technically difficult due to the area the cancer is in and the risk of spread in operating) but I can't help feeling so utterly fed up at the moment. Chemo and radiotherapy obviously did not work the first time around (I finished chemo in March 2010 and rads in June 2010 having had original dx of BC in Oct 2009). I'm 47 on Zoladex injections, Letrozole, Ibandronic Acid and Adcal D3, all of which are giving me some SE's and now this to 'look forward to...NOT' !!

Sorry I'm ranting (which isn't like me at all) Could really use some advice

Leigh

Forum Post: Re: Help needed - Cyberknife vs Tomotherapy vs IMRT vs gamma knife - what's the best????

knicnic — Mon, 05 Mar 2012 20:31:00 GMT

ruthie@cyber-ron.com is her email address