End of Brentuximab and why!

After Cycle 5 of Brentuximab, of which I asked to go back to the full dose this time, to see if the dose limiting for the peripheral neuropathy and total time delays totted up and therefore may have contributed to there being disease progression after being PET tumour free after cycle 2. So I decided to have another PET scan to complete the picture for me.

Cycle 5 of Brentuximab showed since cycle 4 that the disease was indeed stable so no progression of the disease , no reduction and no growth within the last and single dose cycle.

This led me to conclude a few things looking at what had happened since the first cycle objectively...

Brentuximab for me at least needed to be given in its standard dose not dose reduced and not delayed to ensure its best outcome.

I have learned that Brentuximab has low cure rates and most certainly low durable remission rates, so why is that? In short there are no scientific answers to this as the drug companies don't go looking for this information. So I hypothesise based on my experience and outcome that  the drug only inhibits its metabolic activity temporarily and does not kill the seeds of its primary local existence, therefore in my opinion, the drug should only be given in combination with a chemo that a patient is tested as being sensitive to, vis a vis RGCC chemo sensitivity tests. Something like a GemCarbo regimen + Brentuximab is far more likely to succeed. Why? Because you need to disrupt and remove the micro environment consisting of your own immune cells surrounding the Hodgkins RS cells, thought to be attracted there by Hodgkins as a camouflage to stop the immune system attacking the Hodgkins cells hidden among them. I don't believe Brentuximab can or could ever destroy those micro environment cells as quite simply and factually they are not CD30+ Cells that Brentuximab targets, but ordinary chemo would.

I have also established a link from research into high Ferritin levels and a Hodgkins that shows that levels of iron deficiency and reduced haemoglobin as a direct result from advancing Hodgkins has a significant bearing and an increase on relapse rates 4 months after radiotherapy. So the more destruction of red cells and the reduced ability to transfer haemoglobin to red cells produced by bone marrow indicates some cause and effect of Hodgkins on your prognosis.

Now because my Ferritin level was 4000 before I started treatment I took ExJade as this seemed off the scale and fought to be damaging to the liver long term. Exjade which is Deferasirox reduces the amount of ferritin stored in the liver, and I took it for about a week during the first two cycles of Brentuximab, therefore given my levels dropped by about 80% after taking this and I had a full response to Brentuximab for those two cycles only and not thereafter, could this also be a factor in the outcome of disease shrinkage and progression? I think this needs investigating.

My next post will tell you what I have done next.

Update at and just after cycle 5 of Brentuximab

Well folks, its been a bit of a rollercoaster since the most recent PET Scan came up positive for a small cluster of lymph nodes in the exact same area of the retro peritoneum that was negative on the PET just two cycles previous. The Marsden could not say for sure, with our argument, that the reduction in dose, from 140mg to 90mg, for the last two cycles and a total delay of 3 weeks, equivalent to a whole cycle, was or was not responsible for the relapse.

I persuaded the Marsden using the rationale that the reduced dose and delays were reasonably the reason for the relapse, since the more aggressive cells, I postulated, had not been well and truly killed off.
so I requested that they give me the next two cycles of Brentuximab at full dose for me (140mg). I will suffer the extra side effects of peripheral neuropathy and others since it is more important to get a remission.

The fact that I had had such an early full response, led Prof Cunningham to think that I may be in the group of 20% who get a long duration of remission. Most patients get a short lived remission on this drug.

My view is you need to add low dose chemotherapy or whole body radiation after a full response to Brentuximab to kill off any Micro circulating tumour cells in the blood which may or may not express the CD30 or that may not be killed by the chemo component of the drug itself.

I asked whether the Marsden offered Metronomic Chemotherapy, which is low dose chemo + Metformin, which research has shown seeks out cancer stem cells for cell death by the chemo. The Prof said he had never heard of it. It is used commonly in dogs, interestingly as they are able to have this metronomic chemo, which is essentially palliative treatment without all the side effects or resistance to the drug for the duration it used. I hypothesise that adding this on top of the Brentuximab afterwards and then having Rituximab as maintenance therapy will give me a long duration of remission.

That's it for now.
Feeling pretty rubbish on day 2 after the chemo so had some acpuncutre and I feel much better. I am also drinking lots of Organic pure Dandelion tea by Clipper which is only £1.69  a box at Holland & Barratt. This is said to prevent constipation and even target cancer cells much better than green tea, to the tune of 10x stronger than green tea against cancer cells.

Fingers crossed the next Pet, scheduled 3 weeks after the last chemo which will be in 3 weeks, will be a positive result!

I'm batting on.

Best wishes to all of you.
Ollie

How do you stop itching, night sweats, B symptoms of Hodgkin's Disease/Lymphoma?

Chinese Herbs/Supplements for B symptoms caused and related to Hodgkin's Disease/Lymphoma

These Chinese tablets are for Classic Hodgkin's Disease B symptoms associated with Lymphoma disease progression. An increase of Yang Chi characterised as Stagnant Damp Heat in the body is treated with these pills from GHK Natural Herbs. These are obtainable from many Chinese herbalists. There is a Beijing Tong Ren Tang - a famous Chinese medicine distributor in China Town, 124 Shaftesbury Avenue, London UK who sell them at a good price.  The Tong Ren Tang pharmacy provided medicines for the imperial palace's royal family and was established in China in 1669 during the Qing Dynasty. These are quality medicines that you can trust because of the strong brand. You have to be otherwise weary with Chinese medicine, since there is no regulation here controlling the substance quality. Some dodgy Chinese medicines contain steroid for example to make you think they work. So this brand is good and I would not recommend anything else. So this eliminates some unknowns on that front.

Even with very severe symptoms you can reduce them by 80-90% depending on the severity of your disease. With Mild disease it has reduced my symptoms by 100% in 72 hours and about 75% in 48 hours.

For Damp Heat - excess Yang Chi - Night sweats and itching (pruritis)

Take: PIFUBING XUEDUWAN - 20 tablets twice per day, am and pm.

Take: ZHI BAI DI HUANG PIAN - 4 tablets twice per day, am and pm.

For immunity - boosting the immune system 

Take: BROKEN GANODERMA LUCIDIUM - 2 tablets twice per day, am and pm.

Nearing the end of Brentuximab Treatment 5 of 6 - Treating Side Effects

I am delighted to report that after just 2 cycles of Brentuximab Vedotin, I had a completely clear Pet Scan. A complete Response they said. An unbelievable response to the drug.

I had been going to Acupuncture twice a week and focused every session on Visualising the good guys killing every bad cell in the area it was on the scan.

I also went to my doctor in Munich, Germany to make sure I was managing the side effects, toxicity and dotting the I's and T's for clearing the Hodgkin's out as much as possible.

The main side effects from the treatment have been Pruritis (Itching) and Peripheral Neuropathy. Both it transpires are as a result of cellular memory from past treatments of which I have had so many. I had severe Peripheral Neuropathy in my hands and Feet in the USA from the chemo then.

I have found solutions to these side effects.

For the Itching (Pruritis) which seems to be incessant scratching below the waist, back and front of the legs. Chinese medicine seems to be the only relief. I figured this out about 10 years ago when I got a chinese prescription of herbs. Back then you had to cook them up and it was a foul tasting mixture. Now its pretty simple just quite a few tablets. There is a good brand that is more of a super food than a herb and does not interfere with the treatment at all. So I will post the prescription up here as it basically works for Hodgkin's patients who suffer from too much Yang Chi which culminates in Stagnant damp heat in the body. No western medicine can help night sweats or the itching but the Chinese tablets  completely cure it and it works every time without fail and in about 48 hours.

The two Chinese concoctions I get for the itching and night sweats from the reputable brand (GKH Natural Herbs) which are distributed very well and are readily available are.

Pifubing Xueduwan - 20x tablets (small round balls) twice a day - am and pm.
Zhi Bai di Huang Pian - 4x tablets twice a day, am and pm.

I shall post the pictures of the concoctions as the names are really hard to pronounce!

To rescue my white counts after each infusion of Brentuximab I have Knochenmark which is German for bone marrow, it's an extract equal to 5ml in 0.9 iger NaCl for intra-muscular injection. It is to be taken 3 days after the infusion. So in my case I have the Brentuximab on a Tuesday and book in for the Knochenmark injection with my private GP on the Friday.
Since having these injections I have had completely normal white cell counts, WBC, Neutrophils and Lymphocytes, whereas before taking the extract my white cell counts dropped pretty dramatically and were heading towards neutropoenia. The only counts taking a hit in the blood now are Platelets, but not drastically at all and Magnesium and Potassium only a little, but not massively. So a banana a day for the Potassium and a Magnesium tablet twice a week.

Now for the Peripheral Neuropathy. I spoke to the Marsden about this and they had no options for me as I have quite a lot of numbness in my thumb, forefinger and middle finger (the Median Nerve) and also my feet hurt after about 30 mins of walking. I then spoke to my Private GP Dr Street who said that she had read a paper on Duloxetine used in PN from Chemotherapy. The Marsden had not heard of this but did confirm to me that the paper existed and were happy to try it. The only issue they say is it is contra indicated when using Metoclopramide (anti-sickness) drug. However my GP disputed this saying that Duloxetine is an SNRI not SSRI so is fine with Metoclopramide according to her drug indication database. So this is in conflict with the Marsden, so I shall have this investigated.

I am going for cycle 5 of 6 on Tuesday so I shall find out more about Duloxetine then. I also want to get the Marsden to give me Rituximab prophylactically for 8 months to a year after the Brentuximab to wipe out the B cells and reduce the circulating Tumour cell count which is now down to 6 cells per ml of blood, though the Marsden do not yet recognise this count. They are going to have to with me and they will in the next 5-10 years as they are about 15 years behind what has been show to be effective in trials by RGCC.

Wiping out the B cells which I have done before with Rituximab carries the side effect of losing the ability to produce IgG immunoglobulin, however you can have IgG replacement therapy. So I would rather have that, which I have had for the last 4 years anyway due to all the previous therapies that wiped out my B cells, than have the Hodgkins back. So this makes logical sense. They are even running clinical trials on Rituximab in Hodgkins and with Everolimus in the USA to see if this is a better option for HL patients than a stem cell transplant. With all the evidence I have from my experience, I think this will turn out to be the way forward for HL patients, since the risks involved in having a BMSCT are too great when compared to the downsides of having Rituximab prophylactically.