Olfactory Neuroblastoma

Hi Northmanc.

An amazing journey you have had and you have explained your journey articulatey.

You were obviously treated by your local GP for some time without getting a Specialists advice....which is so sad.

You are still young and you are very strong for what you have been through, I commend you for getting counselling help...keep getting it!!! You will need it.

I am 71 and have had a journey which is nothing like yours....our journeys with Cancer are all so different. 

I was treated for 6 to eight months by my Local GP (Doctor) for my ear aches with drops!! When he went on holidays I went into his surgery and happen to see a young female Doctor of around 26 years old to get another prescription for drops when she asked what those lumps on either side of my neck.

She immediatey booked me in for a CT Scan and A Ultrasound and Biopsys, I was immediately diagnosed with neck Cancer, the Primary at the base of my tongue and secondaries to either side of my neck glands. 

With my Bowel Cancer..once again, I was treated by another GP. for nearly 12 months with a bleeding bottom with suppositories for polyps, I demanded a Colonoscopy....the next day after my Colonoscopy I was on a opperating table have cancerous areas removed from my Bowel. 

My story is on my site under...Onetreehill......

Never trust your Local GPS...get a Specialists advice. 

I look forward to your progressive updates.

Cheers for now 

Onetreehill.

Hi All - my husband had olfactory neuroblastoma diagnosis in Sept 2015 and surgery in October 2015. Also at QEUH in Glasgow. I will ask him to share his story as reading them all, I know it will be helpful.  Wishing you all well in treatment and recovery. 

Thank you Camouf

I am currently going through a Strong Chemo suggested by MD Anderson Hospital, Houston, USA. I went there with my wife for a second opinion and the Chief Sarcoma Department Doctor Benjamin suggested a strong chemo which I am currently taking in Singapore. All previous chemo given to me not working on me anymore. I wish you get completely well and keep in touch. God Bless.

David NSR

Hi all. I don't really know how to start a new conversation on here, I only ever seem to stumble upon these posts. Olfactory neuroblastoma is so rare that I feel its really important to share what we know. so here goes for anyone who might be interested.

Ive posted before about my sons diagnosis. Aged 15, diagnosed after a very short history, with an aggressive ON that had completely blocked his nostrils, no sense of smell, breached through the cribiform plate and metastisised to his lymph glands. The diagnosis was given to us on 1 Feb 2017.

Since then we have been on that massive roller coaster ride of treatments. The hospital were upfront with us and told us that they had little experience of this. It is a paediatric cancer team, but they took advice from a national neuroblastoma team that has been set up this year. 

My son had 8 rounds of chemotherapy. Part of a research trial called rapid COJEC. It worked so well that by round two he could smell again. The MRI after round four showed massive improvement. The MRI after round eight even more improvement. After being told initially that surgery was not an option it was now recommended. 

Surgery went ahead in July. Three false starts as his platelets were too low to safely go ahead. A team of five consultants: neuro, max fax, general surgery, ENT and anaesthetics took 12 hours to remove the tumour, surrounding tissues and lymph glands. Five days in PICU, one in HDU, six days in the ward and we were home. The surgery was performed via a craniotomy and endoscopically. He has several titanium plates in his head. Had his dura removed and replaced with periosteum, so no need for skin grafts. His scar is in his hairline and now that his hair has grown you cannot see it. The scar across his neck goes from ear to ear but is fading well. Post surgery MRI and histology of all the samples showed no evidence of disease. Huge sense of relief.

He is now ten weeks post op and has no issues relating to the surgery. He feels really well and is very active. He had some initial weakness and blurred vision on his left side but that all resolved within a few weeks.

We believed all along that the next step would be radiotherapy at a local hospital. We had mentioned proton beam therapy to the Clinical Oncologist way back in May as this disease is covered by the NHS England PBT protocol. Nothing more was mentioned until early August when I received a phone call to say that he had funding to come to Jacksonville USA for PBT. Which is where we are now. PBT offers similar results to radiotherapy but with less long term side effects. So fingers crossed for the future.

Until I knew that he was getting PBT I hadn't heard of another ON patient getting PBT but since I have heard of a few, and a couple of teenagers as well. You can download the NHS England PBT therapy guidelines off the internet. Its a tough criteria to meet and being in the USA for 9/10 weeks is tough as well. But it will be worth it in the end I'm sure.

Ive rambled on quite a bit, and believe me this is the short version of events but I hope that this helps anyone else out there who is going through this. I am more than happy to answer any questions about our experience if it will help others. What we have to bear in mind is that not one treatment plan fits all. We need to trust and believe in the NHS but making suggestions along the way cant hurt.

Good luck everyone. XX

Thank you to everyone who has replied to my previous post, it's greatly appreciated. :)

I had hoped to write an update during my radiotherapy, but it became so gruelling that I simply couldn't face even reading this forum. However, I now feel that I can post an update.

I completed 30 fractions (5 x 6 weeks) of radiotherapy early in August.

Now, I don't want to frighten anyone off, as everyone's experience is different (and may be completely different if you do not have head & neck cancer), but I think it's fair to say that I felt like I'd experienced one of the eighteen Buddhist levels of hell during my treatment.

So, I thought chemotherapy was bad? And the post-craniotomy recovery was worse? Well, NOTHING prepared me for the experience of radiotherapy. I have never felt so ill in my life; I really thought I had found out what it's like to die of cancer at one stage, I really didn't think I was going to either complete the treatment or even survive it.

After being warned that "the side-effects will probably kick in at Week 2 or 3", mine started on... Day 2 :(  Literally an overnight change: Day 1 was fine, other than feeling a little strange/anxious, with a not particularly pleasant warm feeling which actually resolved overnight. But after the 2nd session, it all changed. Pretty much immediate loss of appetite/taste, extreme lethargy, mucositis, that horrible metallic "chemo taste", mild headache, disgusting and constant nasopharyngeal secretions. and a mild burning/feeling of discomfort to all treated areas. This all became progressively worse as each week took its toll, and worsened for six weeks post-treatment. Two weeks after treatment, I could barely walk 100m without feeling faint, and had to almost crawl up the stairs to my flat.

By Week 2 of radiotherapy, I was on Fortijuice as my main source of nutrition; solid food had became impossible to take, as well as completely unappealing. Unsurprisingly, this led to drastic weight loss - nearly three months post-treatment, my weight is now stabilised at around 70kg, but I weighed 96kg before chemotherapy started in March and 103kg in December last year. Admittedly, I have no intention of ever returning to my original weight (my healthy weight should be no more than 75kg), but the muscle loss has taken its toll on energy levels. It's great being thin again, but I've dropped three sizes in clothes, which is an expense I don't need when I'm on half pay, haha.

I am still on the Fortijuices; however, I am now taking a slowly-increasing amount of solid food: substantial soups full of meat/vegetables are best, plus anything with lots of sauce (cutting vegetables/meat into smaller pieces than usual before cooking is a BIG help). I tried some pizza a few weeks ago - NEVER AGAIN - well, not until my mouth improves a little more, at least. It was like eating gravel. And that's after a significant improvement in the condition of my mouth.

My sense of taste returned slightly about two months post-treatment. I can taste coffee, I can detect the difference between various fruit juices, and sour/salty flavours are starting to become noticeable. Anything even remotely spicy (pepper, Worcester Sauce, chilli, garlic) is intolerable, even in small amounts - this is a big change for me as I normally eat a lot of very spicy food (I'm a big fan of Sichuan cuisine, which is often explosively spicy). Fizzy drinks are also intolerable, but I don't really miss those. I cannot yet taste anything sweet, and most foods don't really have a "flavour" as such, it's more a case of finding "textures" I can tolerate and which feel pleasant/edible. It's really difficult to describe this, but I would hope that someone who has been through a similar phase may know what I mean. About half of my daily calories are now obtained via "real food" rather than Fortijuice - this is a big improvement on a few months ago (during the radiotherapy, I was surviving on around 600-800 calories a day, which is nowhere near enough, hence the rapid weight loss).

Physically, I'm doing much better now. I can walk several miles a day without problems, but I often fall asleep in the day time. The after-effects of the radiation are wearing off gradually but quite quickly now (hair growing back, facial hair returning, damaged skin much improved, secretions are minimal) and, apart from a recent nostril infection, I mostly feel pretty good. I vacuumed my flat for the first time in months today, and it took me a "normal" amount of time, and I didn't even feel tired afterwards. That's a BIG improvement compared to the last time I tried, when I could barely manage even a quick clean-up, unlike today's much more intensive tidy-up.

I am expecting to be back at work within the next month, assuming I respond adequately to physiotherapy and the occupational health doctor allows me back. I've been off work since the beginning of March, and I'm desperate to get back to a normal life.

To end this post, which was intended to be brief, but turned into a mini-essay. I had some good news a few days ago - my first post-treatment MRI shows no obvious evidence of residual tumour. While I understand that this is only the beginning, and I cannot possibly assume I am "cured" yet, it is still the best news I could possibly have hoped for. Perhaps all the suffering will turn out to be worth it after all...

Hi Northman 2017

Wow, you have been through the mill with this very rare cancer, but i’m Hoping from what you’e said that you are on the road to recovery right now. 

I am a 7 year survivor of Olfactory Nueroblastoma and consider myself to have got off lightly compared to you - although I had post operative meningitis and an arteirial bleed during a 3 week stay in Hospital! I was told to expect all that you exoerienced during RT  but I didn’t; Due, in no small part to being offered RapidArc RT and Caphasol mouthwash. It wasn’t easy but I was still able to eat ordinary food throughout (tasting like cardboard!) and I slept a lot but managed to avoid a lot of the side effects - swelling on the brain, a peg and steroids - predicted by my oncologist and team  (I think I shocked them!).    

But the most important thing is that there is light at the end of the tunnel and I am now 7 years down to had road and COMPLETELY back to normal. I have  MRI scans once a year and see my surgeon twice a year but life is great again . You have this to look forward to fx

Hi!  I am new.  Not sure exactly how to do this here is our story...

My husband is the patient diagnosed with olfactory neuroblastoma end of April 2017, tumor in sinus went through bone into the dura. Surgery was May 1st with ent and neurosurgeon at northwestern in Chicago.  This was done nasally, repair to brain with fat patch and spinal fluid drain placed in low back for the first 5 days.  

  Treatment was always to be proton beam radiation therapy but there was some question about if chemo would be beneficial alongside radiation.  This was presented to tumor board and determined no chemo.  

PBT began June 20th and 33 treatments were recommended ended August 4th.  It was a very difficult time, eating became more difficult at week 2 and got worse from there.  A feeding tube was offered (into stomach) to help with nutrition, my husband declined. He became very weak, loss of muscle mass, depression, slept poorly.  Symptoms were at their worst 2 weeks status post therapy, he was hospitalized for dehydration and anxiety. 

 Prior to diag my husband DM type 2, sleep apnea, overweight at 275+ pounds.  He has lost 85 pounds, of course sense of smell gone, taste improved at this point, hair loss improved (still missing some spots of hair beneath nose- he always wore a goatee).  His skin has improved, still some dark pigmentation on neck.  Treatment was head and neck (for “insurance”).  He has headaches daily and some sinus issues.  Uses neilmed rinses as recommended 2-3x day.  It has been an emotional and difficult time, tough financially and very little emotional support from his family (insert am disgusted with in laws). We are however fortunate that we live 30 minutes away from warrenville proton center.  

August 8th we had mri s/p radiation and showed no signs tumor.  While recovering he had issues with gallstones and other gi issues unrelated to treatment.  He returned to work mid November part time.  

Followed up with ent 4 months on 11/28, sinus infection sample was taken for culture, mri repeated.  Here is my current heart break.  MRI showed changes behind repair- either 1) radiation damage 2) new tumor 3) infection entered brain from sinus.  Admitted by Neuro for aggressive antibiotic treatment for found mersa in sinus.  IV antibiotics at Home currently.  2nd mri while in hospital leans to radiation damage but not ruling out tumor.  So now we wait, see if spot grows, next mri December 20th.  Crainoectomy has been discussed if not infection.  MRI report released to his online chart, reviewed with mds I work with.  

We all have a story, sorry mine book form.  Thanks!

I have also been diagnosed with an olfactory neuroblastoma. I’ve had both radiation & chemo therapy. My question is when will my taste buds wake up?

Mine came back within a month but my major problem at the time and now still is the radiotherapy kills the saliva glands so my mouth and tongue were dry all the time which made chewing and swallowing  certain foods impossible. This does improve slightly in time but the dry mouth is a lifelong side effect unfortunately.  Try putting a fair bit of salt into your food at the time of cooking. You can also add other condiments to bring the flavour up. Ironically my palette is incredibly sensitive now so food tastes great or not. Keep postive

Hi Minnie.

My sons taste buds woke up fairly quickly after chemo finished. However, they had changed. He now likes quite strong tasting foods/drinks. He’s reluctant to try different things but that’s probably an age thing, he’s 17. When he does try new things he is often surprised.

He has no sense of smell now but has compensated for this quite well.

You don’t say how long ago your diagnosis and treatment were? Everyone is different. There are many types of chemo that affect people different,y too. 

I hope that your taste buds wake up soon. Are you giving them a little nudge with different tastes and textures? 

Good luck.