Hi Toate,

Welcome to our forum. I am so sorry to hear about your relapse in 2016.

I have had 2 bouts of breast cancer - the first in 2010 and the second in 2011. My cancer is a rare one too and I can appreciate hw difficult you are finding it to get information. I had to go to some of the American sites to find out more about my strain.

There are 5 posts on this site about NLPHL. If you go to the search facility on the blue banner at the top of this page, pop 'NLPHL' in the search box and click on it, this should bring up previous posts.

Sadly, relapse or spread is a real fear for most people with cancer, irrespective of what type of cancer it is.

Why don't you contact one of the nurses on this site and see what they can tell you. The freephone number is at the very bottom of this page. Am I correct in saying that you will now be waiting a few months after chemo before having a scan to see whether or not the chemo has worked?

I hope that this will be good news.

Kind regards,

Jolamine xx

Hi Jolamine. Thanks for your post. I know my chemo was sucessful to a point. I am pallative care so I just have to wait. I have yet another scan in 3 weeks so it will be interesting to see the out come of that. I am resigned to my fate i have had NLPH for 39 years now so I don't think a nurse can tell me much. I have Guys and the Macmillan nurses there who are wonderful

 Yvonne.

Hi Yvonne,

I hadn't realised that you have had this for so long. By now you probably know more than your care team about NLPHL. It is good to discover that you are getting the support that you need.

Please stay in touch and let us know how your scan goes. We are always here for you.

I am glad to hear that you know that your chemo has been successful to a point and hope that you get a good outcome from your scan in 3 weeks.

Kind regards,

Jolamine xx

Hi Yvonne

i have read your post with interest and hope that all is ok with you at the moment

My daughter was recently diagnosed with NLPHL and I agree entirely about the frustrating lack of information available

it sounds as though you have sadly had many years of experience dealing with NLP and I would be really interested to hear more about your story, which may help me to understand what might lie ahead for my daughter and to make sure we are making the right decisions aboutvtreatment

Hi Dianne,

Sorry I have taken so long to get back to you but I have had a lot of issues. 

I am so sorry to hear about your daughter and I hope that she is responding well to treatment. Please get intouch of there is anything that you need to know.

This time round I had CHlVPP x6 which seemed to work very well. After round 4 there was no measurable nodes. I was a stage 3 and lucky it was picked up as an incidental on a scan. Before I had radiotherapy, COPP, and MOPP. All were successful because I'm still here to annoy everyone. However, the side effect this time round have been horrendous and I an still suffering now having completed my chemo nearly 2 years ago  The Vinblastine they premature suspended it after 4 cycle because of the extensive nerve damage which I have been told is permanent and is painful. 

During treatment I found that diet was extremely important. Even though everything tasted of cardboard I had set wholesome meals that where heavy on the iron and essential vitamins. Even though I really did not want to eat I would machanically eat. This saved me from blood tranfusions. I had learnt from before where I would have the transfusions.

I did everything my medical team told me and I seem to be clear. I have a check up in Jan hopefully thats clear. I could list all the things that the chemo has left me with this time but I really don't want to frighten you. Mine I think is left over from before and coupled with another round has impacted and made everything worse. I have been living with this now for 41 years.and sick of it but I refuse to let it beat me. The anxiety never leaves you and just the sight of xxx Hospital turns my stomach over.

Hope I have not worried you.

Hi Yvonne,

It's good to hear from you again, although I'm sorry to hear that you have had a number of issues. I am delighted to hear that your treatment seems to have worked well, but what a pity about the side effects. Can I ask what nerves in your body have been affected and, how you are coping with this?

I am glad to hear that you managed to avoid any blood transfusions, by being so careful with your diet. It must have been so difficult to continue with this when you didn't want to eat - Well done!

Kind regards,

Jolamine xx

Hi Jolamine,

You want to know which nerves are affected. It's difficult to say all of them because I am unable to have an MRI scan. I have metal clips in my abdomen from 1980. So head and neck have not been checked completely. I do think there is damage there. I am dizzy, I have eye damage, loss of hearing and horror upon horror gum damage. All assosiated with the chemo. The damage in my nerves is mainly my hands and feet. My feet being the worst. It's peripheral neuropathy. In the feet you can't feel the floor. It's like walking on shingle. I have no feeling in my toes and they feel extremely cold all the time. They are painful and at night they are worse. Especially in the great toes. Some nights I can't take the weight of the duvet. My hands are different because there are other things going on, but with the neuropathy I can't feel the ends of my fingers, which means I am unable to do finer things like buttons, pick up things ect. They are not as painful as my feet but I also have capel tunnel in both hands.Which is very painful. I have just had surgery in the right hand for this and it seems to be recovering well, but this can take 18 months to.I have an appointment in 2 weeks for the left hand and to see how the right is doing. I have arthritis pretty much all over. It stated after my first round of chemo in 1980. The steroids have caused joint damage. I cope as well as I can. Some days are worse than others but you learn to live with it.

The most fustrating thing is not being able to do thing that I used to. I am a potter and I have had to take a hiatus from it. I also love to draw and paint but have trouble holding a pencil or brush. I am hoping after my surgery is completed I can restart these activities.

Why did you want to know? Are you experiencing problems? We are all different and cope in our own way. I am getting old and had this for a long time so I suppose that is a factor.

I hope all is well with you.

Yvonne.

Hi Yvonne,

I haven't had chemo or radiotherapy, but I had Tamoxifen for my first bout 10 years ago and Letrozole for my second. I was also taking Gabapentin and have a Morphine patch. I also have a host of other medication. I had to stop taking Gabapentin after a few years because I was losing memory and concentration.

I first noted the neuropathy in my legs. All the medics claimed that this was due to Diabetes. They checked me every couple of months for 3 years, until they finally got a Diabetic reading. This started in 2006, as I was driving back from a conference in Leeds. there was a slight redness to the area, so initially I was told that it was circulatory. Since then I have only had the redness on 3 seperate occasions, but I have a 'burning' sensation there continually along with the neuropathy.

i have had dry mouth due to medication for a number of years now. This has progressed to a thrush infection, which won't heal up. This leaves a horrible taste in my mouth and throat and all food tastes like cardboard. I also have hearing loss.

In 2012 I was diagnosed with Lymphoedema in both arms. I also have osteo arthritis throughout my body. It was mild when I was first diagnosed, but has got much worse with Letrozole. I stopped taking Letrozole after 6 years in 2017, but still have all the side-effects. I now have large nodules on all of my finger joints, which, along with the neuropathy makes it difficult to do the finer things too. I had bilateral knee joint replacements in 2016 and have had 5 eye operations. It is sometimes hard to say which is causing the most pain - the swelling, the arthritis or the nerve pain.

I have been having 'fit type turns' for the past few years. they don't last for long and I don't lose consciousness, but they leave me feeling drained afterwards. More recently, I have experienced a strange 'waterfall type effect from the middle of my head, down the neck and shoulder. This usually stops just above the elbow. I have seen a neurologist with this. He carried out the usual balance type tests, which were fine. He then referred me for a brain scan. With what you have said about your clips I am now worried as I have 2 titanium knee joints. I have been waiting 2 months for this and hope to get it soon. I am a bit worried about this, as my mum had cancer for 12 years before it metastasised into her brain. I am just coming up to 11 years, so you can imagine what is going through my head.

I have read all the information leaflets that come along with my medication and many of them list the above problems as side-effects. As a rule I don't usually bother to read these, as it is too easy to imagine that you have all the symptoms mentioned.

I am glad to hear that your first operation for Carpel Tunnel seems to have been successful and hope that the next one is too. I know only too well how frustrating it is trying to live within your limitations. It would be great to get back to some of the things you enjoy doing.

Like you, I cope as well as I can. A cancer diagnoses changes all of our lives in some way or another, but it does make us stronger people. I have learnt to live within these limitations by relying heavily on my mobility scooter and my wheeled walker, plus 2 sticks. Some days I feel like I'm 101, but I've no intention of letting it beat me.

Kind regards,

Jolamine xx

Hi Jolamine,

I would not worry about your knee replacements. They are modern but do meantion it to your doctor. My clips were inserted in 1980 so are not. I have just purchased a mobility scooter too, which I love, but I still don't get out very much because of my compromised immune system. I don't have a spleen so I avoid crowded places. That's difficult living in London. I love to sit in my garden but that difficult at this time of the year so I feel like a caged animal.

You can't worry about what happened to your mum everyone is different and medicine moves on for better.I am sure you will be OK. I do understand your anxiety. I have just come off the Morphine patch and I feel I have so much more energy. Talk to your doctor about a change of drug regime.

Anyway all the best 

Yvonne

Hi Yvonne,

I am allergic to the usual knee replacements, so mine are different from the norm- I'm not exactly sure what they're made of. I don't have a gall bladder, so I have to be careful in crowds too. I also have problem with anaesthetics, as I stopped breathing on the operating table when I had the full open Cholecystectomy. At the time I had Empyema (A pustular pleurisy) and wasn't a suitable candidate for keyhole surgery. I now have to have fibre-optic intubation for any operation and have to stay awake to swallow the camera without coughing before surgery begins.

I am trying to put my Mum's experience behind me, but you know what it's like. It keeps rearing its' ugly head again and again. It has taken so long to get my drugs to a stage where they don't counteract one another, that my GP is relectant to make any change, but my neurologist was keen to reduce some of them, as he felt that I was on far too much. He was talking about adding other medication to control my symptoms if nothing shows up on the scan, but I hope that it doesn't come to this.

I know what you mean about the garden. Unfortunately, mine is fairly large and every time I sit down I see something else that needs attended to. Don't get me wrong, I love my garden too. I just find it much harder to keep it as I once used to.

Kind regards,

Jolamine xx