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.