Lymphoma or unconnected New Tumour.

[Vindicatrix]

Hi All, further to my recent 'post' re the Bells Palsy' that never was, I want to thank you all for your support and advice.

I am still waiting on a 'Biopsy' date, followed by the three week wait for results. After which I will know better, where I stand.

I have received my recent Bloods from my new Haemo team, and it seems to me that there has indeed been a surge, within in a short period time.

In October 2022, I went through a six month period of, five courses of antibiotics, for wound, urine, chest, and Viral infections, along with two very bad reactions to my 5th and 6th Covid jab,

During that time my WBC went from 45, in October 2022, to 119, in July 2023.

My July full Bloods also showed.

HB. 107, Low.

WBC 119, Hi.

MCV. 101 Hi.

RBC.3.59 Low.

Hct 0361, Low.

MCHC 297 Lo.

Neut 8.09 Hi.

Lymp. 108 Hi.

Mono 1.39. Lo.

I admit to being very poor in assessing my Bloods, as I feel at times it is away above my 'Baby Bear's Brain' capacity'. If anyone can interpret these figures for me, and hat they mean, that would be very useful.

I am given to understand that these figure show an unusual Surge, and indicate an end to Watch and Wait, with treatment close at hand.

I have been informedthat given the results of my recent MRI Scan, and the very small tumour found in an inaccessible area, moving from a the Mandible region to the base of my skull, that all the attention will be on this, and the normal CLL treatment will be on hold, until there is some type of resolution.

As I mentioned earlier, I was given the two most probable reasons for this. tumour:

One was I had 'Lymphoma' which is treatable palliatively.

The other was that it was a separate tumour., which as I say would be inoperable for me.

I know everyone has their own way of dealing with our various Cancers, some don't want to know too much, and I fully understand that. Others want a 'Worst case scenario' with no sugar coating.

I have always told my GP's or Consultants, to give me, the latter. and this morning my GP did just that,

As always if anyone has had similar experiences or thoughts on this, I would be grateful for them.

All the best all. Ron

[SofiaDeo]

I am sorry to hear you are going through this, it must be very difficult. At a glance, it looks like you have some kind of anemia and I also wonder about an infection. It's possible the tumor is an example of a "secondary cancer" that we unfortunately are prone to. Since it can't be biopsied, I would imagine radiotherapy of some sort will be considered/discussed, possibly other drug options, although this is pure guesswork on my part. Since you also have CLL I also am guessing no one will be discussing any kind of trial, having 2 cancers generally makes you ineligible. I hope you are able to find a way to address these health problems without further compromising your health.

[Vindicatrix in reply to SofiaDeo]

Thanks you so much for that SofiaDeo, I think you may be right, as there seems to be some delaying with the Biopsy, I was led o believe that it would be done very soon.

I was told by the ENT man that it was a complex one, and that I may have to have a specialist Radiologist, do it, in another NHS Hospital.

As always it's a waiting game at the moment (Never a good time) I have not managed to find anyone who has had a similar inaccessible tumour in the same area as mine. (Not a good sign)

However my 'Bottle' is still half full, and believe in miracles😀

Thanks again, and I hope you are going through a settled period with your own CLL at the moment.

Regards Ron.

[Poodle2]

Ron, I'm so sorry to hear about your troubles. I do hope they can come up with an explanation soon. Did they explain how they know it's not related to your CLL? How do they know it's not a lymphnode...all the best to you, keep us informed 🙏🏻🙏🏻🙏🏻

[Vindicatrix in reply to Poodle2]

Thanks Poodle2, I may not have articulated what I meant very well. My thought process, as well as my speech, is all 'Discombobulated' at the moment.😀

The 'Multi Discipline Team' (MDT Are trying to decide, via Biopsies' if this is Lymphoma, or an unrelated tumour.

The tumour, as I say, is almost inaccessible, and would be a major operation, unavailable to me , as a result of my age, and medical history.

My understanding from the ENT man who called me , is that it may be a cancer of the Lymph nodes, in my neck leading to my skull base. As he explained CCL is a cancer of the bone marrow. (I wasn't aware of that, and it seems back to front to me.

I am preparing for the worst, but hope there is some way they can shrink, or stop, the progress, of this tumour, which he described as , very small.

Thanks again for your interest, and that of the many who have posted me on this, it has kept me 'Sane' 😀

Regards Ron

[SofiaDeo in reply to Vindicatrix]

If it's not a CLL infiltrated node causing the problems, FWIW, most head & neck type cancers statistically are squamous cell carcinomas. These are treated by various methods including radiotherapy, & immunotherapy in addition to surgery and standard chemotherapeutic protocols. So "it's in a place we can't readily operate to remove" is more "descriptive" than saying "there's nothing we can do". Since obtaining that biopsy would allow the docs to determine the treatment with highest chances of success, finding a specialist to obtain it is worth the wait IMO. It's frightening & upsetting to have to wait/deal with symptoms while waiting, though. Good Luck!

[Vindicatrix in reply to SofiaDeo]

Thanks SofiaDeo,,good advice as usual, and I am living as normal a I can under the circumstance.

When I look back a year or so, I realise that I had all the symptoms associated with, 'Skull Base' cancers, both benign and cancerous.

The fact that it is 'On the move' as the ENT man said, concerns me, as well as the location, and inaccessibility of this very small tumour.

If it is not Lymphoma, I can but hope they are able to slow it down somewhat.

Thanks again, Ron

[jabee]

I’m sorry to hear about your situation and I hope it turns out to be the lesser of two possibilities.

My husband has a secondary Squamous Cell tumour very close to his carotid artery so they have not been able to surgically remove it as there are too many blood vessels etc. close by. His is metastatic, but even he has had a few sessions of radiotherapy to shrink his tumour (successfully at the moment). If yours turns out to be a secondary cancer, radiotherapy can be very effective in the head and neck area for a lot of people. Depending what they find they might even offer immunotherapy which can be a real game changer.

Good luck.

[Vindicatrix in reply to jabee]

That is very reassuring jabee, and really helpful, in my better understanding of the complexities of all this.

Whilst on W&W, I didn't think too much on what might lay ahead, and thought that I would deal with it when it came.

Now it has, I am scrambling and panicking to get answers. Not a good (strategy)

All the best and stay well, yourself. Ron

[Alex830]

I know how you feel. I had a repeat MRI because I experienced 2 TIA’s during ramp up on Venetoclax in March. Good news, no signs of the strokes but they did find a meningioma. Still small and most of the time these tumors are benign but still it is a scary scenario. Luckily because of the TIA I already had a neurologist and an appointment to go over the MRI results. I have also requested to see a neurosurgeon, just to get an opinion if the time comes for surgery. I sure hope your tumor is related to lymphoma and starting treatment will be the answer.

[Vindicatrix]

Thank you so much, good advice and I will take it . I'm more than happy with all the time being spent on this by so many people, I know I am in good hands, and also the the 'Lap of the Gods'. I am not religious, but, very hypocritical.😀

All the very best. Ron.

[Mogane]

Hi Ron, just wondering could this new tumour be benign? We seem to be very prone to growing lumps and bumps - not sure if it’s the same with all those with cancer.

[Vindicatrix in reply to Mogane]

Thanks for responding Mogane, The ENT man hopes it Lymphoma which is usually treatable.

The other option is a seperate tumour, it is on the skull base, having travelled from my Mandible area. It is in an area which is hard to access.

I have had previous mixed tumours taken out in that region in 1974 and 1984 respectively, the last with Radium treatment at the 'Marsden'. So I'm thinking its related to those, and may have been part of the cause.

If an and when I get the Biopsies, they will know for sure, and I will get a prognosisnd the appropriate treatment, if it's possible. If not, I'll deal with that at the time, but I am under no illusion as to the outcomes.,

In any event, I I have been told that it would be a major surgery, and I would not qualify due to my age and medical history.

So I am hoping I have 'Lymphoma' which is ironic isn't it. Who would have thought one would wish for another cancer. 😀

Thanks again for the info, and I hope you are going through, a 'Well' period (We have to grab them when we can)😀

Regards Ron

[Mogane in reply to Vindicatrix]

Honestly, although I was profoundly shocked to learn I had a cancer I remember even then being thankful it wasn’t MND (ALS in US). I too hope it’s a lymphoma - keep us posted. I’ll keep you in my thoughts.

[Vindicatrix in reply to Mogane]

You are absolutely right, Mogane, there are a host of 'Nasties' out there, most which, people don't want to know about, so horrific, are they.

When my bottle dips below half, I remind myself of this, and the bottle soon fill sup😀 Ron

[Mogane in reply to Vindicatrix]

Keeping fingers and toes crossed for you

[Vindicatrix in reply to Mogane]

Thanks Mogane, it is so good to know that, we are all looking out for each other.

Prepare for the worst, hope for the best, that always forks for me.

Take care of yourself. Regards Ron

[Classicaljazz]

Have the doctors done a PET scan on the new tumor? I wonder if it might help in determining if there is an infection or what type of tumor?

[Vindicatrix in reply to Classicaljazz]

Thanks, ClassicalJazz, the Multi Disciplinary Team (MDT) started looking at this on Wednesday, they are currently deciding if my local NHS Radiology Team are competent to do the Ultrasound Biopsies, as they are somewhat complex, I'm told.

I'm also told. If they cannot do it, I will be transferred to Edinburgh NHS where they have a specialised team.

If they go ahead with the ultrasound, it will depend on what the next step is. An Operation is out of the question, due to my age and health history, and the inaccessibility of the tumour which is very small, but moving.

If it is not Lymphoma, and from what I have read and heard, that seems to be unlikely,

My own feelings are that it is a separate tumour, in a similar location to where I had the tNeck Surgery.wo mixed parotid tumours taken out in 1974, and 1984, respectively, the last with radium treatment at the Marsden. . I do hope I'm wrong, but will deal with that at the time.

I had Peta test 5 years ago when I was diagnosed with a TIA stroke, and CLL. I was part of an Trial' they were doing on neck surgery, I think. Whkether they will do another one, I don't know, I think I have every immaginable test known to man/woman. over the last feew years.

IThanks again for the interest, and info, and I do hope you are going through a 'Well Period',, yourself

All the best. Ron.